Caregiver Support

The "WE" Thing
By Michael A. Szczepkowski

For 2 years, I confronted PH as a caregiver for my wife who developed the disease secondarily to Scleroderma. Looking back on the entire experience, I have come to recognize that there is a certain set of issues that face caregivers. One such issue subtly appeared in my use of language to describe our plight to family and friends.

Last year, I wrote about this issue to the PHA web-site message board. The post was entitled "The 'WE' Thing":

I have noticed, being a caregiver myself, that I tend to use the word "WE" frequently when describing how this disease has played a role in our lives. For example, I find myself saying things like, "We were told..., We were diagnosed with..., We tried doing..." I realize that I have used this language only after the fact and then become concerned that I have diminished my wife's role by including myself in such comments. But the truth is that I find myself so impacted by this disease and so involved in her care that, in some difficult to explain way, I have this disease, or some variant of this disease. To fight it, for her and for me, I have immersed myself in it. You see, it must be more difficult for this disease to achieve victory when it has two enemies to fight; two bodies, two minds to overcome. I hope it grows tired soon, but in the mean time, the best revenge is to live life completely as "WE".

Well, within months of this post, my concept of Kathy and I fighting together as a team was tested as she entered the hospital for the last time. It was then that the two diseases decided to wreak havoc on her body and mind. We fought as a team until the very end when these rare diseases were ultimately victorious in taking her soul away.

Because we fought like a team, we buoyed each other when one of us felt like they were drowning in the disease. Because we were seen as a team, our clinical caregivers never expressly gave-up hope and our family and friends never left our side.

I now write about this issue to provide some buoyancy to those who are currently giving care to a loved one with PH. My learned message is a simple one - the best revenge IS to live life completely as "WE".

It is very hard, while engaged in this battle, to recognize the blessings that are unfolding. Do not submit to guilt if you find yourself describing you and your loved one's struggle in terms that place you on the front line of battle. Rather, recognize your expression as a sign that your bond has become stronger than many are fortunate to experience in a lifetime.

As Kathy's body grew unrecognizable from the ravages of illness, I observed her growing more beautiful and more brilliant in spirit than the woman I married three years earlier. PH and Scleroderma will never be able to take that eternal blessing away from us.

So, cherish the "WE" thing.

Note: This article was originally published in Pathlight, Spring 2000, Vol.8 No. 1.