Living With Polio
Loves Me – Hates PPS
Post-Polio Health, Volume 27, Number 4, Fall 2011.
Dr. Stephanie T. Machell is a psychologist in independent practice in the Greater Boston area and consultant to the International Rehabilitation Center for Polio, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts. Her father is a polio survivor.
Question: I am not bitter because of the love of my life, my family and my God, but it gets tougher and tougher to survive and tougher on those who help me. I have children who help me and a wife who loves me but hates PPS and what it has done to her husband. How do I deal with a/support person who loves me but hates my PPS?
Answer: I want to respond first to the fact that it gets tougher and tougher. I presume you mean as you age – the symptoms get more pronounced, weakness from polio combines with weakness from aging and new symptoms appear. Where maybe you could walk a city block, now it seems like a big effort to go from the bedroom to the kitchen. Perhaps you have started to use assistive technology such as a scooter or wheelchair, or now you have to use crutches all the time instead of just some of the time. Yes, these are big adjustments, not only for you but for your family.
I am going on the assumption that they love you, and would rather have you around, polio and all, than not. So, if you will forgive my bluntness, everyone needs to get over it. That is, I suspect you had polio all during your marriage, and hence all during your children’s lives. This is not a new issue for the family. But I hope the family is able to talk about it openly and honestly, perhaps with the help of a professional counselor or a church elder.
Hold a family meeting, ask everyone to be honest in how they feel. Problem-solve the areas that are emotionally and/or physically difficult. For example, does your wife feel held back because you cannot do something? Would you be okay with her going some places without you? Does she feel able to do so? Is she worried that as she ages she can no longer help you in the same ways? Do some tasks need to be doled out (to children, neighbors, church members, hired help) or even not done at all?
I want to emphasize that we polio survivors need to be careful about ascribing any new or worsening symptoms to polio when in fact they could be due to a treatable cause. For example, I went for several years thinking I had just reached a new stage of disability. In fact, my thyroid hormone levels were low, and taking thyroid medication returned me to my previous levels of energy (which, admittedly, were still low and still decline with age, but are no longer debilitating).
Second, I have to wonder about your idea that it is possible to love you but hate the polio. Imagine substituting another descriptor for “polio” and see how it sounds. For example, you could never say “my wife loves me but not my gender.” They are one and the same. You are who you are as a polio survivor. There is no you, and then on the side the polio. There is only you with polio. It’s a package deal. I suspect it may be that your wife doesn’t hate what it is doing to you, but rather what it is doing to her (e.g., preventing the two of you from taking trips, or putting more responsibility on her for household tasks).
So re-read what I’ve said above, and find out what the issues really are. And remember, those vows say “for better or worse,” even if the worse sucks.