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Sarah Ing
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Sarah was everything to me. She was my sister,
my friend, my partner, my guide. She trusted me and she strengthened
me and I will not forget. She is an honest thought, a sweet emotion,
a firm handshake, a tough question and an easy answer. She is our
strength when we have none and our eyes when we can not see. She
is me, she is you, she is everywhere and she is everything, and
I will not forget. I love you Sarah.
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On September 8th 2002, Sarah Ing passed away. Sarah has been a contributor to the PHCentral diaries since August of 2000, and it has been my pleasure to correspond with this positive and creative young woman during this time. We will definitely remember Sarah. Most
recently, she collaborated with Cheryl Switzer, PHC's Feature
editor, to write our feature for June, Sarah
of the Moment. |
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Sunday, August 06, 2000 Begin at the beginning or write what you know. Whatever the advice, here goes. I have had PPH for 3 years, after diagnosis in 1997. The first round of doctors is the familiar routine - felt "out of shape" at 24 years old and 140 lbs. Fainted sometimes. I knew it was not normal. I knew it with every fiber of my being. Come on! What healthy young woman can't go hiking with her friends or keep up in a game of basketball. The whole situation was intolerable. I am a talker and blabbed on to most important people about how I felt. This marked the first noticable condition to being ill. My boyfriend was no help, besides he was incredibly active and couldn't understand my feelings of inadequacy. Let me explain that I am an actress. In theatre at the time. And in a very physical theatre company. We danced and played and romped. We were energetic and glowing with youth. It was hard for me to keep up, God knows I tried. In fact, being a dancer for so long had helped me survive as long as I have. So, I was in a play that required dancing, which I pulled off with little aplomb until I suddenly got sick. The doctor diagnosed me with Pneumonia. That wasn't it. Finally, after many tests, they sent me to the hospital for fear of a pulmonary embolism. I didn't have one and they sent me on to a specialist in Houston. I am lucky to have a professional recommended right away. Every one at the hospital knew what it was. With a heart catheter and a dose of CCBs, which failed as they often do, I was officially diagnosed. In the hospital, surrounded by specialists, with tubes sewn to my body, and the day fading fast, my hopes dwindled. My mom saw me like this. That's what really tore my heart. She saw me weak and wrecked, looking like I was going to die. I mean, I only had slight SOB at that time. I could have walked out of the hospital at any time. I regret her having seen me like that and I know better now. After the diagnosis, I went home with a feeling I now consider deeply disturbing...but normal. I felt relieved that something was wrong with me. So many times, I had trailed behind while trekking up mountains (my friends and family were big campers)and wished I had a disease. I actually wished for it! Then, I had one and the outlook was horrible. Of course, I went on-line to see what this PPH was. That was another unfortunate introduction. 3-5 years and no cure. Ugh! But, I kept my chin high because, if anything, I have always been an optimist. Maybe I was an exception, maybe I was curable, maybe I didn't even have it. All of these hopes fell apart over the years, as did my denial. But, that is part of grieving. My mom was an active part of my false suppositions and we spent a lot of time spouting "what ifs." Years have passed and now I have increased SOB with heart palpitations. I am on coumadin and nothing else. I hope to soon take part in a clinical trial for Bosentan. This journey has been sublimely horrible and fantastic. I owe my increased awareness to PPH and my strength is directly related to this disease. I wanted to introduce myself to begin a dialogue with myself and others who might be reading this. I have learned that knowledge is valuable. It may hurt at first, but it is absolutely necessary to heal. Sort of like knowing the rules so that you can break them. This diary is for my mind wanderings and lessons I have learned. Monday, August 14, 2000 I lost my job on Friday. It was perfect, too. Writing for the internet. I could wake up whenever I wanted and write all day in my skivies. I knew the end was coming and am sorta glad the other shoe dropped. My conflict now is do I get another job or hold tight for a while. I am capable of working outside the home, but I am blessed/cursed with a husband who makes some nice moola. That means I can choose to stay home and culivate my acting career which can take alot of time. However, I have found that working from home sucks your interpersonal skills out of you. When you never talk to anyone but cats and set your own schedule, conversation skills dwindle. I miss having a crew of co-workers with whom I can chat. I miss being out in the world with action buzzing about. So, there is the reality check of needing people to talk to and the necessity for intellectual stimulation. Plus, no offense to stay-at-homes, but I have a college degree and many skills. No kids means little work in the house. I am wasting away in here! AAHHHH! I will compromise and try for a freelance part-time job. It's hard for us actors because we have to work at our passion and a dayjob until we get our break. And I am convinced I will get my break. Like Flaubert says "Talent is long patience." Otherwise, I am feeling good lately. The heat is a bitch. And I thought California would be better than Texas. Well it is except for August- the month from Hell. I went shopping today and hauled a ton of groceries upstairs. Whew! If only L.A. had potable drinking water, I wouldn't need 80 lbs of the bottled kind. So, things are sort of in limbo. Sometimes I wish I were older because I heard people in their 30s have it all figured out. Then again, the "journey" is all about the struggle, right? Otherwise, you wouldn't know you were moving forward. This way, getting over hurdles serves as landmarks for progress. Too much, Oprah. I know that things will get easier. I will get work from somewhere. I will land an audition because I can act. And, someday I will not have to live in an apartment in the Valley with only one parking spot. Meanwhile, I appreciate the half hour drive to the ocean, the ease with which I can talk to my husband and the endless possibilities for my career. Next week on the Young and the Breathless: Will Sarah make the bank? Do the cats really understand baby talk? And Why aren't these realities on Big Brother? Tuesday, August 22, 2000 This is a landmark day because I landed my first part. Albeit a small one (waitress) in a small play. Coming from a market where everyone knew me and I got big parts all the time, this is an adjustment. But, Rome wasn't built in a day. The most profound statement I heard recently was work begets work. That's true. I am also opening myself to the universe and allowing things to happen to me. Like a job. A job happening to me right now would be ideal. I am resisting looking into substitution and what not because I know something better is going to develop. I hate that this disease limits my life in subtle ways. I find myself watching TV and thinking "Man, I couldn't do that." Or being envious of the casual energy of others. They take it for granted that the well-spring of breath is going to be there. I know I did. I used to be so spunky. Often called a "free spirit," I bounded about and threw myself around willy-nilly. Now, I am way more conservative with my strength. Maybe that's better. Just call me focused. I hope someday I will be able to hop around with abandon once again. What would I do if PH was cured? -I would go dancing, long and hard. -I would take the stairs wherever I went. -I would try kick-boxing. -I would have a child. -I would travel to far exotic places. -I would backpack across New Zealand. -I would never rest on my laurels. -I would live each day. What can I do anyway? -I can write a book -I can adopt a child -I can make people laugh -I can dye my hair strange colors -I can paint the world -I can create new laurels -I can live each day
Thursday, September 07, 2000 The only time I really despise this disease is when it interferes with my creative life. I can handle the stair issue. I can tolerate driving everywhere, even down the street. I can even find joy in not bending down to pick up the laundry. But when I can't behave as I'd like on an audition, that pisses me off. The other day I went to an audition for a short film. The role was a woman looking for something. Simple, right? It was in a small classroom and there were three people watching. Well, though the script called for her to be searching cabinets and high places, they made me look through a mess on the floor. Twice. Frantically. At auditions, it's hard to breathe in the best of times. So, here I am totally wiped from bending over alot. They tried to interview me but I was so breathless that I just wanted to get the hell out of there. I was embarrased. Here's the dilemma. Do I tell them that I have this lung illness that makes it hard to breathe. If I do, they won't cast me for fear of me keeling over during the filming. Then I will have to explain that I can handle it if I can rest and please please give me a chance. Or, I could not tell them and let stand the assumption that I am tremendously out of shape and why doesn't she work out if she is an actress, she must be lazy. Aaahhh! I remember being younger and stretching my comedy wings. I was so good at running around and actively making people laugh. Now, that aspect of my personae is all but squelched. Recently, I have had to admit that I will probably never be able to be the type of actress I wanted. That's ok, I still have an active face and voice. But, part of my dream has died. When I am in improv class, I avoid the running around sketches, even though I would be so good at them. I try to keep things easy for me. It's sad and I feel cheated alot of times. But, what can I do? I have to make the best of my situation, I guess. start working out my brain endurance. Friday, October 06, 2000 I am sitting here with a big hole in my neck that feels like a Goiter. The aftermath of a heart catheter two days ago. Yuck! I went in to get evaluated for a Bosentan trial. My pressure are at 120, so gee I guess I qualify. Now, I am on the medication and we'll see. I have a good feeling about this one. I got cast in a student film as a high schooler. Since I am 27, that is pretty flattering. Now, the challenge is to figure out how to hide the big Vampire marks for Saturday's shoot. I think a trendy choker will work nicely. I also skipped out on a callback the other day because I didn't want to drive for another 2 hours. Here in L.A. we do a lot of trekking, but I had already sat in the car for 3 hours that day. Plus, the role was for a woman playing Russian Roulette with her boyfriend and I was depressed enough as is. I haven't had a major hospital procedure in over 3 years. But, I remembered how ill it makes you feel. Disregard the fact that I am well enough to walk out of there anytime. The gowns and booties and IV. The tubes and monitors and blood pressure cuffs. The assistants calling you Sweetie and the many unknown hands on your chest feeling for your heartbeat. The offer to remove my underwear in case they need to go in through my leg. The possibility of having to pee laying down. Above all, the other patients who are invariably older and sicker laying in ICU with visitors saying "Hang on, just hang on." And then waiting for 3 hours to be checked out. Waiting for a doctor any doctor to say "you may go." Eventually, getting the nurse to remove the IV and leaving without permission. It all makes me want to run far away to a place where youth is not spoiled by the body. Where I am fully engaged in my good fortune. Where there are no doctors. It all makes me feel dirty somehow. Thursday, December 07, 2000 I knew this would happen. I knew that in my profession, ups and downs are inevitable. Ok, so this is a down period. That's acceptable. I must for that reason rant into my diary. The comedy sketch show I was in was cancelled. We rehearsed for months and were promised a four week run. Instead, we got a power trip by the producer and were made to feel like naughty little children. I was disappointed because I thought I was representing myself honestly. I was trying to be impeccable with my word and ended up out of work after all. That was disappointing. It always is when you meet someone that betrays your trust, or operates under shady motivation. So, I wrote a nasty e-mail. Then, the dream job I thought I had turns out to be challenging at best. My boss is majorly hard to please and also makes me feel like a naughty child. I would like to maintain the job because it is teaching me to be a better writer. But, I am tres sensitive to my working environment. I once worked as a defensive driving teacher and had to quit eventually because the students always hated me so much. They hated being there and I felt it like a spike in the heart. The good news is that I am back in funds again. Just in time for Present-mas! I am looking forward to going home and seeing my mom. I am going to surprise her with a return ticket to L.A. for the Oscar's (family tradition.) My husband got a raise and a bonus. I am super proud of him. He deserves it all and more. It's so funny. When I list my rants, I often forget about PPH. And then, in the end, I add, "oh, yeah, and I have that incurable lung illness." I am grateful that it doesn't impede on my life that much. Sometimes I feel so impatient with things. I can see where I want to be, but I don't know how to get there except for waiting. I can do little things here and there to improve my chances, but it all comes down to fortune. Such is life, I suppose. Tuesday, February 06, 2001 This has been a turbulent month, made even more complicated by my participation in the Bosentan drug trial. It is over now and I am on the real thing, so I expect to be leaping tall buildings in a very short while. Maybe it's because January is a month of reckonings- coming to terms with the new year and the mistakes/victories/suprises of the past. Maybe it's because I am forced to tediously analyze my every physical sensation, wondering if I am doing better. Whatever the case is, I have been to the depths of despair this month. It all started rather innocently. I was having stomach pains and thought they would go away. They didn't and I began to get worried. I keep thinking back to what my mother said: she gets less worried about aches and pains the longer she lives in her body. But, I am only 27, so I am a basketcase. At the same time, I am on the Bosentan trials. Funny, isn't it, how life goes on and doesn't pause for our troubles. So, I was plunged into this depression suddenly. I am a very happy person normally, as dysfunctional as that is. I have been depressed a few times: when my boyfriend dumped me to travel the world, I didn't leave the house for 2 months. During that void, I learned to drink and made McDonalds my second home. I bummed out after college when I realized a theatre degree will only buy you a ticket out of town. I'm pretty sure there was some chocolate binging involved in that recovery. In any case, I have given up drinking and if I see another fudge brownie after Christmas, I will puke. Now, when I am depressed, I talk. To everyone. "Whah! I am so bummed and I don't know why." This leads to reciprocal emoting and pretty soon I am receiving e-cards with cheery messages and everyone is asking me "how are you feeling?" which you and I know just leads to the birth of unreasonable tears. Ok, so I am over that depression. And what did I learn? I must live in the present or I will go insane. That is the hardest thing for me to do. I am always thinking ahead- an hour ahead or a week ahead. "What's on TV tonight" or "How am I going to land an agent?" The answer never comes and I wind up spending an afternoon out of my reality. It's especially important for PPHers to live in the moment. After all, tomorrow might be a crappy day where you can't even look at a flight of stairs. But, today, right now, I am feeling good. I have begun giving off a little prayer to the universe when I am doing well. Like today: thanks to the powers of our creation that I am healthy and pain free. AMEN! I have been struggling more with the idea that I must pursue a homeopathic medical plan. Part of me thinks that I shouldn't divert my energies, go traditional or alternative but not both. But, when my pain is non life threatening, like this stomach thing, it is easy to envision a less invasive form of treatment, like acupuncture or herbs. My gastro wants to give me an endoscopy just to see if I have an ulcer, which he thinks I don't. My God, a tube down the throat with sedation just to see. I don't have to do this. When I had my heart cath to start the Bosentan study, I felt so miserable. Here I am, not really sick, in a hospital, attached to all these tubes, for a test. It makes you feel powerless and robs you of vitality. I can imagine an endoscopy will make me feel the same way. I have to think about it for a while. I say that now cause my stomach pain is gone today (Thank the Universe). Little Miss Wimpy may sing a different tune tomorrow. On the career front, I haven't found an agent yet but am still looking. I had 2 auditions last week and am excited about the beginning of pilot season. The thing about L.A. is that if it doesn't work out this year, there is a new project in the works every year for the rest of my life (if need be, but my husband probably wants to retire in a nice city). My predictions for the coming year: Laying roots and creating a home Finding the pulse of the city and taking a blood sample Giving myself permission to fail Having a hell of a good time in our new house and getting a dog! Monday, April 09,
2001 April 9, 2001 It's been a while. I have now entered phase two in the whole grief/illness/reckoning experience. My, aren't we learning so much having to live with this bothersome dis-EASE. I kept telling myself that I will fill in the diary when I am feeling better, when I am feeling better, when I am feeling better... You'd think around the third promise I would notice that, hey, I am not feeling better. So, get ready for a long one. Illness is so connected with emotion and bargaining and logic. I have been thinking for about 6 months now that I can figure out a way to feel better. If I think about it long enough or research far enough, I can crack this PPH code. What must I do to cure myself. Can I wish myself into a better state of mind that will somehow regenerate my lungs? Can I meditate to lower my heart rate and thus bolster my energy? I will slowly dissasemble my body specialist by specialist until every nook and cranny has been x-rayed, probed and pictured. Then, I will be able to say "I am the lucky one because I figured it out." How egotistical of me to believe that I am so entirely different. I'm Sarah, my lungs are stronger and my heart is a fighter. I will never need Flolan because I am better than that- I can survive until they find a cure if need be. I will presist because I am made of tougher stuff. Well, guess what, the bubble has burst. The final nail in the coffin. The tribe has spoken: I am the same as everyone else. My flesh is weak and I am vulnerable. I can't think myself healthy. I have no control over how I feel right now. It's not because I am holding bad chi in my 4th chakra or because I have unresolved issues with my sexuality. It's because I am sick. Cut and print. Realizing this has taken all of my soul and mind. It ends a long journey from "I don't even have PPH" to "I have PPH and it affects me like everyone else." It's so funny. Most of us spend our whole lives trying to fit in. I wanted to be different. Special. Now, I just want to feel normal. So, fact-wise. I am on the Bosentan post-study meaning I finished the trial and am on the real thing. At the beginning of the trial, I was feeling pretty good. More energy, longer walk tests. Then, they started messing with the dose and everything went downhill. My walks suffered. I developed a full feeling in my head and chest. My stomach started feeling bloated and I kept getting faint. Then, I got back on the low dose, they upped it and just last week lowered it again. I still feel like crap. In fact, I have never felt crappier, thank you very much. I almost fainted while dropping books at the library. My right arm hurts when I "get my blood up" as I call it. I can hardly walk across the house without feeling tired. This is it- this is the worse I want to feel. I can't go anywhere and am captive in my new house. This sucks. Now, the reckoning. Cause a person can hardly be trapped in a house in the Valley of L.A. without doing some collective reasoning. I am a failure because Bosentan may not be working for me. What's wrong with Sarah when doctors all say, "Bosentan is a miracle drug, we are very excited about it." Why won't it work for me? Does God hate me? Thought process #2: What is to become of me? How can I be an actress when I can hardly walk to the audition and only want to wear overalls all day? Who overcomes this kind of obstacle? What casting director finds that desirable? Do I have to throw away my dream since forever cause I don't have the energy? Thought process #3: What comes next? Flolan or nothing. Can't very well feel like this for much longer. Not when Flolan is such a wonder. Also, must note sneaking fear...if Bosentan didn't work, Flolan might not either. And then, I am truly screwed. This has all been wandering around in my brain. Stomping on my good vibrations and bumming me out. I have been hesitant to write it down because I wanted to get it all figured out and solved first. But, this week I have realized I am not going to solve this one by myself. This is the next phase, where I need to throw it up to the universe. I surrender. Now what? Monday, May 14,
2001 They say you can't go home again. But, you can surely visit. My last few months have been a roller coaster of emotions, the most recent of which is relief. I have been so uncomfortable for such a long time that I knew better times had to be ahead. So, finally, I did some reading and matched my symptoms to those of water retention. It helped that my ankles and lower back had started to swell. My stomach was so big that every time I went out, which, granted, wasn't often, people would ask me if I was pregnant. C'mon. Women, especially, should know better. It is imperative that patients take control of their fate. That means reading all we can on PPH and its many complications. Reading about medications and side effects. That way, we can plot a course for our own recoveries. Well, I read about Lasix and aldactone and urged my doctor to put me on them. I guess he didn't immediatley suspect water retention was my problem. But, I was convinced that I was in heart failure. I was wrong. And he finally put me on lasix. Well, the first day I lost 5 pounds. And slept on my stomach! The following week, I lost 10 more pounds. He upped the dose again and I lost 10 more. So, here I am 20 pounds lighter and feeling like a new person. When we are sick, we so easily adjust to different feelings and conditions. It's like I got a new body very quickly. I forgot how good it felt to be able to take a nap without coughing. I can see my knee bones and my shoulder bones. My legs cross differently due to the skinny thighs. More importantly, my stomach is a lot less full. I have lost about 2 dress sizes and weigh what I did in college. Now, I like being skinny as much as the next supermodel, but I really like feeling normal again. Makes me wonder how long I had been retaining so much water. Years? I am excited about shopping for new clothes and my self-image has improved 10 fold. I put on makeup the other day for the first time in about a month. I put on pants. Ok, they didn't fit, but it is a step up from the mumu I was wearing. I dyed my hair a fiery red! To go with my new nailcolor. As far as Bosentan goes...I still have my doubts. I have also met and talked with some other folks on the medication. They seem to be having similar feelings, meaning they feel ok but not supergreat. They haven't experienced a miracle revitalizing. Which suggests to me, Bosentan takes longer than doctors think to work or we need a higher dose. In any case, I don't think Flolaners should be jealous of a miracle cure. During my bad period, I did a lot of thinking about Flolan and quality of life. I decided that it is important to feel better, regardless of any inconvenience. It is important to live and live well. The rest is gravy. So, I welcomed the possibility of Flolan into my life. After considering Flolan, UT-15 is easy. Now, that I am stable yet still limited energy-wise, I can see the future and am not scared. I welcome any changes with open arms. We'll see what happens in the near future. Hopefully, I can resume my life again. All I can say is that PPH is like a giant snaking river. We swim as hard and as fast as we can. Then, we drop out for a while, resting on the shore. When we catch our breath, we rejoin the stream because the water keeps flowing. Regardless of us, the water runs on. For me, that is a comforting thought. Tuesday, June 05,
2001 Ah, to be young and in love. The flowers smell sweeter, the sun is blinding. My heart expands from something other than PPh. Life is good. I have recaptured my age. I have planted a flag on the northernmost hemisphere proclaiming myself queen of the world. And isn't it about time? I mean months have gone by when I haven't imagined a painted nail or begun to visualize the theatre. My butt has been rooted to the chair in a slump of careful exhaustion. Just now, I am breathing again. It all started when my husband, Tim, and I went out for my first movie screening, albeit a student film. But my head was 30 feet tall! Afterward, around midnight, we had chili cheese fries at Fatburger. May not sound romantic, but it was one of the best nights I have had all year. I felt young and unstoppable. I felt wicked and momentary. I felt 28! Slowly, very slowly I am discovering the world again. Three trips out, then five stops. Walk to the parking lot and maybe carry books into the library. All without stopping to catch my breath. The curled up edges of my horizon are peeling back just a little. Enough for me to see inside. Once I lost 25 pounds of water weight, everything started to change. Lasix at 80mg took care of that pesky edema. Little by little, my stomach has shrunk back to normal. The UPS guy asked me if I had had the baby. My cough is gone and my stomach cramps have disappeared. I still get tired if I do too much. Pacing myself is the key. I am now on 125mg of Bosentan. Which they say is the ideal dose. My doctor is not into checking pressures, so I haven't explored that. But, I feel better everyday. Except for lightheadedness or what I call a free buzz when I stand up, no side effects. The frustrating part and a warning for all those that might go on Bosentan after reading this is my doctor expected it to work way too quickly. He gave it a few months. Well, it is just two little pills a day. So, I say more time is needed. I have been on the real thing since February and am just recently feeling better. Not perfect, stairs are still scary, but my energy is back and things seem possible again. So, I have this new body and it is freaking me out. In a good way. I wouldn't recommend the diruetic method of weight loss, but it sure worked for me. My clavicles stick out and my hindquarters won't support my granny panties anymore. I dropped two dress sizes. My God, was I retaining water for such a long time? I mean, I was the same weight for 4 years. Now, my wedding ring won't fit. Ah, the perks of possible heart failure... I am reawakening. The long months when I was feeling like death are behind me. Summer is here. I want to put on a bathing suit and bury my toes in the sand because I can breath again. Yippee!
Thursday, August
23, 2001 Happy Anniversary, dear diary! It's been a year since we met and I see the beginnings of a beautiful friendship. I just returned from a visit to Texas in honor of my ten-year high school reunion. Eeek. For the first time since PPH, I used my head when traveling. Here's the deal: I am only 28 and seem to think myself too strong to use the baggage check-in. After all, only a few years ago, I was backpacking across Europe. But, the last time I flew I almost died of exhaustion. I had to walk far to my connection and the stewardess was holding the flight. She said, "hurry- come on," and I started crying and said, "please, just give me a second." You know how it is: I had no breath left in me. All the while nobody offered to help with my bag. It was God awful. Then, I got really sick and during my "down time" I realized who am I that I can't use some help. After all, I am alive and that seems to be everything I am guaranteed. So, this time, I checked my bag and just carried a purse. Aaahhh- the sweet relief. At the gate, my mom met me with a wheelchair. Ok, here's another first. I let her take me but I was screaming with embarassment. Again, who am I that I need this special service. I didn't use the chair on the way back and regretted it- so that shows me. I also had yet another first yesterday when I used the electric cart in the supermarket. Honestly, I felt really stupid. I am sooo incredibly aware of what other people must think of me- driving around and looking so healthy. I would almost rather feel tired than brave the possible bad thoughts of strangers. Weak, huh? But, I am still learning. Anyway, back at the reunion. So we all piled into the local American Legion Hall which I haven't visited since I was ten for professional wrestling featuring the Rich twins and Rowdy Randy Piper. This time, there was less sweat but some of the outfits were the same. My ex-compatriots looked fabulous overall and some were their parents. But, I felt like I held my own. I didn't tell anyone about my disease. And I was ready to go after about an hour of "where do you live, what do you do, are you married/have kids?" After that, I visited my college friends who are a totally different crowd. Talk of cow roundups was replaced with predictions of Hillary Clinton. We ate fancy meals with cloth napkins instead of burritos with chili and cheese. We drank wine instead of Lone Star beer. Don't get me wrong, I like my Texanisms as much as the next Bubba, but it was refreshing delving into a more sophisticated world. I did tell them all about my disease which my mom has dubbed "The Affliction." You know it's strange when you talk about PH because people have one of a few different reactions. Some are totally interested and want to know about cures and drugs and symptoms. Others are so scared, their lips turn white. They want to get it over with and move on. Some think they have heard of this hypertension before and why don't you try some exercise. So, I try to keep my explanations short. Then there is the inevitable comment, "well, you look great." Then the defensive return, "thanks, muscle atrophy will do that for you." But, comebacks aside, I have this thing I do. I know it is going to take a few attempts at normalcy before my friends realize I am not the same and stop trying to behave that way. For instance, I am driving and they tell me to park in the lot behind the restaurant. They point and whine and I have to say "shutup I am going to park as close as possible and you can all bite me." A short stunned silence before they all crack up and say "Sarah's back." But, with enough stubborn resistance, they stop trying to make me walk places and accept it. We PHers have to fight outward appearances all the time. Otherwise, my bad weeks are shortening into bad days. I feel tired less and less often. One day many months ago when I was just emerging from the sick time, I decided to get a haircut. You see, I had been living the entire year for other people. I thought if I had longer hair I would be more "marketable" as an actress. But, I hated it and felt like an imposter everyday. I didn't recognize myself and just ended up feeling like a fraud. So, I cut it. I chopped it. I died it black and spiked it up. Now, people see me- revitalized and self-aware and they say "nice hair." If only they knew, it was my soul that got the makeover. Thursday, October
25, 2001 Sometimes I can see things clearly, like a sharp outline against a dark sky. Other times, I am thrown by the crowded and various passages that stand before me. I think I have things figured out then it all dissipates like sugar in water. My greatest solace is that others are equally transfigured and stripped and we can at least all share our confusion. The tragedy on September 11th woke me from a sound sleep. I was slumbering gratefully having landed on a plateau of easy times. My husband literally shook me from my dreams on that day to tell me the world was changed. I, like many people, spent a week with eyes wide and fingers clenched. I couldn't stop watching television. When I finally turned it off, I craved the barren images even more. My reaction to this mass murder was fascination, anger, forgiveness and anxiety. I talked about freedom and wrote peace on my arm. I watched for revenge and hoped for patience. As the shock wore off, I was able to claim a more distant stance and realized something. Americans are going through what we PHers have already experienced. Namely, a look at their own demise. We are all imagining simultaneously what it would be like to lose your life. And, ain't it a bitch? Suddenly, the unwashed dishes become unimportant. Suddenly, the distant future shrivels up like a pruny fruit and we are left with just ourselves. Only our hearts and minds to lead us. No guarantee of a lifetime. Nobody is promised anything. Welcome to my world. As the days grow shorter and the numbness deepens into acceptance, I feel hardened. More than ever, a sense of randomness overtakes me. Why me? Why them? Why anyone? Then, I get tired of trying to figure it out and just think, "s**t happens." Now it is more important than ever to live as if we only get one chance. For me, that translates into tons and tons of questions about my career and my family. Do I still try to become an actress or do I give in to the writing bug? Should I move out of the hell that is L.A. and take up residence in the South of France? How long do you struggle for your dreams before you try something else? Do you live for a higher purpose or do you just live? Meanwhile, back at the ranch, my husband wants to quit his meaningless job. My mother is retiring and becoming a full-time RVer. And my brother is auditioning future mates like there's not tomorrow. See what I mean? No matter how frustrating and hazy my own search for clarity is, everyone around me is undergoing a similar ass-kicking. And that feels good. Monday, March 25, 2002 I thought the day after the Oscars would be a good day to add a new entry. The slate has been wiped clean and anything is possible. Kudos have been awarded, egos stroked and the future is wide open. At least that's how it seems here in L.A. And, honestly, that's how it seems in my life as well. I love the Spring. How the sun is unflinchingly bright and the sweaters and socks drop off bodies like snakeskins. My mood seems permanently attached to the whims of the clouds. And sunny days are my favorite, favorite, favorite. These past few months have been sublime. I guess it all started when I went to a support group meeting in Torrance. There was a good collection of people there- on Flolan, Tracleer, UT-15 and nothing at all. We talked about new meds coming out and the conference and each other. It was my second such meeting. Upon entering the lobby, I held the elevator for a few folks who said "you go ahead." I knew exactly what they meant. The short walk from the parking lot had exhausted me a year before. Then I looked around the gathering and felt lucky for the first time in a while. I was full of energy and talk. I felt like the top ten percent, the valedictorian. From then on, my body kept blossoming more and more. I walked to the drug store. Can you imagine? Ok, it's only like a block away but still. The news was enough to amaze the husband. I saved it until he got home so I could watch realization dawn on his face. The next day I was driving and got something stuck under the car. I pulled over and "ran around" to pull it out. That's exactly how I would describe it. It has been so long since I "ran around" or "hurried over" or "dashed along." I forgot how you take it for granted that when you need the strength, it will be there. I have felt so good lately. Motivated physically and well, almost normal. My cheeks carry a distinctive flush from Tracleer but it is becoming. And this all seemed to happen within the last month or so. But, I feel like I have turned a corner. I still have bad days where I want to sit all day or my stomach won't cooperate, but overall, I wake up ready to go. I have been on Tracleer for over a year. I figure it is just now showing a true difference. So, all those waiting, be patient. Maybe it's all related to my ordinary life. I am writing a screenplay and it is so fun. I feel like I have a purpose again. My mom has moved out here to join my brother and I and the family is complete. The sun is shining. Everything seems brighter like after a good rain-only it doesn't rain here in L.A. So, all those factors combined with my new well of energy make for a pretty good time. I wish everyone could feel as light. Maybe some day we all will.
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