An article re-printed from a website dealing with a related chronic disease (ALS Survival Guide)
An old adage goes "It is not the things that happen to us but the meaning we give those experiences that cause us pain."
If we consider that idea, then we have a certain choice and power over the losses brought about by this disease. How we define (or remember) ourselves and our family relationships before the onset is a key issue and task for our current mental health. For example, your view can be, " I (Harry or Mary) have a great sense of humor, adventure, fairness, a love of conversation and have a very playful relationship with my partner." The disease process could have shifted that view to "I (Mary or Harry) am a victim, can’t do anything, can no longer talk and am a burden on my family."
Good mental health has to be based on the core person you each were (as an individual and family) before the illness, allowing for the limits and losses. Counseling must help you to re-connect with those characteristics. It must help you re-envision and rediscover yourself. It also requires you to set up situations in which those characteristics can be experienced and expressed again.
Probably every one has read "Tuesdays with Morrie." Wasn’t his unique essence the ability to be himself and make his natural curiosity, analysis and joie de vive present in every interaction? We can dismiss it by saying, "He was exceptionally well-educated or rich or blessed." But I would raise the possibility that he had good mental hygiene habits. What does that mean? He was who he was (including qualities and warts). He felt what he felt (reverence, irreverence, anger, appreciation). He identified his needs (discussing philosophy or have his anatomic orifice wiped). He valued other people’s gifts and time and he "opened his cage." What the heck does that mean to "opened his cage"?
As this disease steals from us or our loved one his/her ability to locomote, communicate, use familiar skills, there are initial reactions, just as in other fearful situations. We freeze, flee or fight.
When we freeze, our world becomes narrow and we stop reaching out, involving other people in our life. Each loss of skill or ability becomes the focus of our thoughts, rather than discovering how to compensate for that loss with technology, alternate ways of moving, communicating, or relating to people in a more personal way.
When we flee, it is usually inward with depression and isolation. We lose patience with people who don’t quite understand our new way of talking and then we stop talking. We become TV- focused and passive. That leads to intellectual, emotional and physical stagnation because we don’t use resources that the physical or respiratory therapist or neurologist suggests. It is easier to isolate in the short term but it costs big time in the long run.
When we fight, we usually pick the wrong fight. We fight with our caregiver, maybe because they are so willing to understand. We fight with our doctor, maybe because she can get up and walk away and will never fully know all of the pain and sadness. We fight with our formerly athletic body because it has betrayed us.
When we "open the cage" we connect with who we are, where we are as far as freezing, fleeing or fighting. Then we open up to the world, move out of the unproductive behaviors and interactions. We challenge ourselves to breakthrough isolation and passivity. (This is where a good mental health counselor or prudent medication can help.) We begin to choose new adventures (going to the movie, setting up a date with our spouse or sibling) and to invite the right people into our world (enthusiastic, joyful, honest, challenging people, good storytellers).
You as an individual and family are involved in the biggest fight of your life. But now is a wonderful time to wage that fight. When Lou Gehrig’s fight was going on, there were no handicapped accessible buildings, accessible vans, Internet, and websites. Biotechnology and metallurgy has made a difference in utility of support resources. The "can do mentality" of the 60’s and 70’s has made support groups a necessary and productive part of dealing with any adversity. Fight the good fight and use the full resources.
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.