An Attitude of Gratitude

 

It has been several weeks since I have really had the mental energy to sit down and write anything. I keep telling myself to get going and do something constructive, but I usually lose interest or get tired after a short time. In fact, it's taken me several days just to write all this. It's very frustrating, and that's when I know my friend Lewy is messing around with me.

There are many topics I've been thinking about, but I wanted to write first about what it's like to go through this journey from a human relationship perspective. I have so much to be grateful for, and that is what I want to focus on in this particular blog. 

There is an old saying:

When you're up, 

Your friends know who you are.

When you're down,

You know who your true friends are.

I think that has perhaps been a very difficult lesson for me as I have walked on this journey and navigated what it means to have a form of dementia that is so often misunderstood. I have quickly learned that many people whom I thought were friends and confidantes disappeared when I became ill. While I understand it intellectually, there is some pain and bitterness that comes from acknowledging that.

But what has become more and more evident to me is that the relationships I have forged over my lifetime here in my small town and in this North Country have sustained both my wife and me through a very difficult transition. 

The very first people to reach out to me to offer any and all support and love (beyond my family) were my high school friends. I had a very tight-knit group of friends all through our school years, and they were so quick to ask what they could do and to actually come to see me. We started an instant messenger group where we remain in contact continually. They make me laugh and feel connected.

The first thing they wanted to do was to schedule a reunion this past summer so we could all get together. While I do not remember much of the day (Lewy was kicking me during that time), I have seen the pictures and can see the love and friendship so evident, and I feel it even though I may not remember the details.

For me, having to give up driving has been one of the most difficult aspects of dealing with this disease, as I had to give up my independence at the same time. Relying upon other people  to cart me around is a humbling - and often frustrating - experience. I have always been the first to offer help and the last to request it, so that has been a challenge for me.

But I have had such good friends step up to help drive me to and from my physical therapy sessions. No words could ever express my appreciation to my friends who stepped up right from the beginning and took me to therapy twice a week. No questions asked - no equivocating - just right there. 

Our next door neighbor offered to install a ramp for me so I could get in and out of the house more easily and independently. Again, no questions asked and no expectation of payment. 

Out of all of my colleagues with whom I have worked with and on behalf of over the years, only one has reached out to me to let me know she is thinking of me. Receiving her cards out of the blue always make my day and help me to feel like I have not been forgotten. Funny how the smallest of gestures often have the greatest impact.

My brothers and sisters (and that includes my 3 crazy sisters-in-law) have reached out to help in so many ways, from helping transport me to just coming to visit and to send me messages to keep my spirits up. 

My daughters, son-in-law, and wife have been so patient and understanding, trying to help in whatever way they can. I know how much of a strain all this has been on them and how much our lives have turned upside down since my diagnosis, but through it all they remain right there beside me. Michele has been such a rock through all this, and I could not deal with any of this without her beside me.

This walk with Lewy is often very isolating, confusing and lonely. But I have never felt more cared for or loved - and it has been by those for whom I have taken so much for granted over the years. Small town friendships, local and faith community support, and former colleagues and friends - so easy to overlook when you're up, but so quick to jump in when you're down.

My friend Lewy has taught me - and continues to teach me - many lessons. One of the hardest lessons has been humility, but one of the best has been to try to cultivate an attitude of gratitude and be thankful for the many blessings in my life.