Making connections through support groups

Posted on May 17, 2016 by Leslie

When I was diagnosed with myotonic dystrophy I don’t remember hesitating before making my way to a support group meeting. I didn’t have preconceptions; all I wanted to do was meet others with the condition. The meetings I went to were for anyone with a neuromuscular disease, not just myotonic dystrophy. We met at a hotel in a conference room with long tables covered with starched-white linens. The facilitator dominated the conversation and I’m not sure if I even had a chance to introduce myself.

Ironically this facilitator had been leading the group for 12 or so years and was burnt out. Shortly after my arrival she left the group and I was asked to facilitate. I had no previous training. I worked as a multimedia producer and all I really had to fall back on were a few years of teaching experience. But I did it. There was no handbook, no training, and no encouraging words before I was thrown into the pool of humanity dealing with at the very least a chronic health condition and other times excruciating life-or-death challenges.

Through trial and error I learned how to guide a group of people from various social strata and cultural backgrounds to become a community engaged in learning and sharing. My hardest struggle has been dealing with difficult people. You know who they are – the person who is wed to a negative point of view, or maybe it’s the person that seems to feel they know it all, or the person that just can’t stop talking and dominates the conversation.

But somehow I learned strategies to really facilitate a meeting so there are fewer and fewer roadblocks. I try to keep the flow of the meeting moving toward a positive goal. Certainly there are times when a person may have a special need, but pulling from my ever-growing bag of tools and resources I can take someone offline and re-focus toward the group. Generally we have a topic or guest speaker. My aim is to increase our education by learning from each other as well as guest presenters.

We’ve practiced yoga, tai chi, and even meditation together. Health care professionals have talked with us about occupational, physical, and respiratory therapy. Community organizations have explained how to access service dogs, free telephones, in-home health services, and paratransit vehicles. Other support group participants have shared how they work with a personal trainer, traveled domestically and internationally using a wheelchair, and created makeshift tools to help them do everyday tasks in and around their home. Together we took sailing and kayak adventures through adapted sports programs. Together we memorialized a long-time member by celebrating his life.

That’s what support groups are about. You meet people you might never have met – humbled in their life path by a force nearly greater than them – and together you learn how to navigate the new path together.

It’s hard to imagine where I’d be if I hadn’t been asked to take on this role as a support group facilitator. Perhaps it was initially intended to be a service to others, but I’ve ended up really helping myself.

Identifying as Disabled

Posted on May 17, 2016 by Leslie

Declaring oneself disabled doesn’t have to be all bad. Once you accept having limited abilities and turn your focus on what you can still do – which is often a lot – you might be able to relish having some time removed from the hustle and bustle of a stress-filled work life.

What does “disabled” mean, anyway? According to the US Social Security Administration, a person is considered disabled if they provide medical evidence that their physical and/or mental incapacity precludes them from working a full-time job on a regular basis.

I probably worked past the time I should have. In 2001 I quit a full-time job that was by far more demanding than 40 hours per week, and which involved lots of travel. I was frequently getting sick and although I earned a nice paycheck, the quality of my life suffered. For years after that I did contract jobs.

Some weeks I worked 20 hours. Other weeks, I had to crunch to meet a deadline and ended up working more than I had energy for. It took its toll on me in many ways.

Eventually, I realized to salvage the quality of my life I would have to learn to live on less and applied for disability benefits. It was emotionally draining to come to this awareness and follow through with the bureaucratic hurdles, but I do not regret it. It provides some peace of mind and allows me the opportunity to rest when I need to. When I replenish my reservoir of energy, I’m able to do things that help me remain attached and productive.

Don’t get me wrong, identifying as disabled takes some getting used to.

According to the US Census Bureau, nearly one in five Americans have a disability. That’s twenty percent. We’re in good company! That’s the largest minority group I belong to. But not all disabilities prevent someone from earning a living. I’m fortunate to have found ways to remain engaged, challenge myself creatively and intellectually, and feel as if I am still of service to my community. And when I need to, I take a break – an hour, or sometimes a full day – and disengage and refuel.

For the Love of Reading

Posted on May 17, 2016 by Leslie

As a child I used to read a lot. In elementary school, they’d give awards to kids who read the most books each year, and I was often one of the winners. But by high school, it became much harder to read what I really enjoyed. That’s not to say that I didn’t appreciate Othello, The Jungle, or Babbit, but they weren’t my first choice.

College was filled with required readings, as well. And then came my entry into the working world. Often my leisure time was spent reading to get ahead in my career. I loved school so I often took classes and read the books associated with the syllabus. Learning was integral to who I was, who I continue to be. But I rarely allowed myself the luxury of reading something just for the fun of it.

In the last several years, as I’ve weaned myself away from my career and found some of my other leisure activities difficult to do – creating art, attending events with crowds, or socializing in restaurants – I’ve decided to read more. It makes me feel like a kid again, back when I had oodles of time to read and not worry as much about the time spent. And my reading interests tend to be more varied now than when I was younger.

However, I have discovered obstacles to reading. A lot of print books are too darn heavy and difficult to maneuver. Until I purchased my first Kindle, I avoided reading. Not only were my eyes fatigued, but just holding a book and turning the pages proved to be exhausting. But the Kindle – and I suspect other electronic readers – are a boon for people with weak arms and hands.

If I am in a weakened state I now have the option of listening to an audio book either on my iPod or my computer. I get excited about reading. I like to have a few books in different modes going at once. I’m especially fond of Goodreads.com, where I maintain a list of books I’ve read, am currently reading, and want to read. Plus, it’s a social network, so you can connect with friends and see what they’re reading, as well.

While reading tends to be more of a solitary experience, there can be a social angle as well. Three years ago I started a book club at my house and invited a variety of friends. We meet monthly and there’s a theme. You can read your choice of fiction or non-fiction, as long as you relate the book to the theme. We also have a potluck. It’s a tremendously satisfying social activity I can still partake in.

Re-Boot

Posted on February 6, 2016 by Leslie

Here I am…ready to blog again…nearly six years later. I’ve brought in my old blog posts. I’m organizing this website in a hopefully intuitive way. And this spring the podcasting shall begin. Cheers!

Planning for the Future

Posted on January 5, 2015 by Leslie

Recently my partner and I went on a road trip to visit a friend in Southern California. This friend – I’ll call her Debbie – was the first friend I made with a similar neuromuscular disease diagnosis (not DM). We met at a support group over 16 years ago. Debbie’s a few years older than me, but we share many cultural similarities so it has always been easy to relate to one another.

Debbie chose to move south for warmer weather, but within a month of her relocation she suffered a stroke that has left her fairly incapacitated. She requires round-the-clock care that is provided by an attendant found on Craigslist. As I understand, her minimal savings precludes her from some government subsidies, yet her savings will only last so long. She has limited family but a network of close friends engaged in helping with paperwork and decision-making.

Over the years, our phone and in-person conversations have been somewhat sardonic and bordering on depressive. She openly shared about her physical and emotional pain but still made great strides to exercise and remain independent. Occasionally we did talk about what our “comfort zone” might look like, i.e. at what point we’d want to throw in the towel or give up. I’ve always appreciated the opportunity to speak with her about this because most people don’t want to go there. In our society it’s rare to find a person openly willing to talk about their decline.

The night before our anticipated arrival I didn’t sleep well.

We arrived in town a few hours later than planned, and with my diminished energy I just couldn’t face seeing her. After a good night’s rest we brought a New York style brunch to her home. It took 30 minutes for her caregiver to prepare Debbie to see us. She could barely keep her head raised and wasn’t able to speak in full sentences. My partner and her caregiver took turns helping Debbie eat, adjusting the thermostat, and responding to her requests from a wheelchair that she could not operate herself.

After a couple of hours we left so she could go to a doctor’s appointment and – quite honestly – so I could process the situation myself. She cried as we were leaving and we promised to return in the evening. We did, and thankfully she was much more lucid as we sat at her bedside, straining to hear her voice while the television was on. It was not an ideal situation, but I saw glimpses of the Debbie I remembered.

I never was able to have the conversation with her that I thought we might have.

Her friends have told me she talks about wanting to die, but she didn’t bring this up with me. She moaned a lot during our first visit, reminded me of how much weight she’s lost, but never talked about the future.

I don’t know what Debbie’s future is. I know I couldn’t live like that, but who am I to comment on what Debbie’s definition of quality of life is? We all have our comfort zones.

What I CAN do is learn as much as I can and prepare for my own eventual death. As part of my personal and professional goals for 2015, I will be involved in preparing webinars and perhaps other informational materials about end-of-life care from a few different perspectives – legal/financial, palliative/hospice care, and the psycho-emotional issues for caregivers and their family. I hope you will join me with this exploration.

[originally posted: http://www.myotonic.org/planning-our-future]

Hmmm

Posted on April 4, 2010 by Leslie

The other day I was pausing in my car before heading to another errand and noticed a young man getting into the car next to me. He left the door open while he squeezed something into his hands. I realized he was pouring a hand sanitizer product into his palm and fiercely working it into both hands.

I was momentarily impressed, for lack of a better word, that he was practicing good hygiene. Until I turned back toward him, moments later, to catch him lighting a cigarette and closing his car door.

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Yoga

Posted on January 26, 2010 by Leslie

I can’t remember when I started doing yoga. I may have tried it for the first time during my college years in New York. Or, an introductory class I took in the late 80s in Fort Lauderdale. That is my earliest memory of doing yoga postures, or asanas, in a classroom environment.

I did start doing the seated lotus position when I was very young. Maybe all children can do this but I continued doing it and now it’s easy to maneuver into. It’s comforting to fold my legs into a pretzel.

But, I digress.

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Tools

Posted on January 5, 2010 by Leslie

In the last couple of weeks I added a new tool to my handbag. Wasn’t planning on it but came across one of those GripIt tools that has about 5 parts to open various containers. I haven’t used it yet but I do feel a greater sense of independence knowing I have it. Which got me to thinking about the other tools I’ve gathered over the years.

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Accurate Puncturing

Posted on December 16, 2009 by Leslie

Leslie with acupuncture needles

This little play on words occurred to me earlier today as I lay prostrate with various needles in me. It’s a monthly habit. Sometimes there are good habits.

Several years ago a couple of acupuncture student interns were guest speakers at my MDA support group. They gave a little history of acupuncture and Traditional Chinese Medicine and promoted a study. They were looking for people with mobility problems. At that time I didn’t qualify. But they discussed a number of ailments that acupuncture has proven helpful for. One of them was carpal tunnel syndrome (CTS).

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