Setting the tone and vision of how you live with a disability to inspire excellence and be an active partner with caregivers rather than a “patient”. [From a presentation for an ALS support group in February 2015. Reading this four years later, it sounds a bit ‘preachy’ although that’s the nature of a lecture. It also feels a bit hypocritical because at the moment I’m facing a couple challenges and don’t feel very CEO-ish. But here it is, and know that I am preaching to myself to get back on track.]
The inspiration for this presentation was a woman with ALS who told me, “I’m a bad patient.” It was heartbreaking to hear about her increasing unhappiness over the months. I don’t think it had to be that way. This is the advice I would have given her and her family if I had had the opportunity.
To me, the term “patient” implies passively letting others do what they think is best for you. I prefer to think of myself as a CEO and partner. Chief Executive Officers have a vision of what their company will accomplish, and how they will operate, and then they get everyone in the company to work towards that ideal. So the first thing is to remind yourself that you are a person not a patient. I will call the woman I met Mary. When Mary referred to herself as a patient, it seemed like she felt she had little control. It’s true that ALS takes our muscle strength and control, but we can still choose how to think and act.
Once you take the step from patient to person, keep going, to be the CEO of your care. I’m not talking about changing your personality, in fact, start by listing the characteristics you like about yourself. Those characteristics form your vision of who you want to be despite ALS. Describe who you want to be to those around you, and ask for their help to live that way. Explain how they can support your vision. Let them know exactly how involved you want to be in decisions. This won’t come all at once, but give it top priority and continue to think about it and communicate it.
Your values will guide major decisions. You might know them right now, or they might surface as you make decisions. If a decision doesn’t feel right, insist on taking time to dig into what makes you uneasy. For example, when I considered where to live, there were lots of logical suggestions. The least logical seemed to be staying at home, but it was the most appealing. By listing what is important to me versus what would make me miserable, everyone else could understand my choice to stay at home. We deal with any challenges associated with that choice, knowing that a different choice would have its own challenges compounded by my unhappiness.
A CEO cannot do every task, or even directly supervise them. CEOs take advantage of every resource they are able to find, and so must you. It almost goes without saying that the Muscular Dystrophy Association and ALS Association are invaluable resources. They both have publications, recordings, and all kinds of information accumulated over years of experience. If they don’t have a service you need they find someone who does. Mary did not go to an ALS clinic http://www.alsa.org/community/centers-clinics/, and although she got a speech device and feeding tube, she didn’t get other unique advice, perspectives and referrals. There is a whole other world that until we are disabled we have no idea exists. Although living with a disability might be new to us, people have been working through, or around, every issue we will encounter. So don’t assume you just have to endure something, ask everyone questions.
Along with the support from associations and the clinic, I also do a lot of my own research into augmentative treatments. A CEO finds out how other companies have achieved similar goals and incorporates relevant tactics. All the information available can be overwhelming. Start with anything that helps you have a positive attitude. That is a key factor in every long-term ALS survivor, and no one else can do that for you. It’s also the foundation to being a CEO and partner. I cannot emphasize enough the importance of a positive attitude. No one, knows if you will live 3 years or 30, so why not do so in a way that brings peace and joy to you and your loved ones.
The great thing about being the CEO is that you don’t have to manage every detail if you don’t want to. An effective CEO builds a team with the skills and attitudes to match his strategy. Where would we be without family, friends, and professional caregivers. Extend this? Describe your team? Combine with another paragraph?
When using many resources you will encounter mixed messages. A wise CEO looks at all the information and considers it against his own goals and values to make decisions. As an example, feeding tube formula is highly processed, which makes it the easiest way to get consistent nutrition. But to me, nutrition for optimal health means whole organic food. Therefore, I worked out homemade formula that I can feel good about eating. A CEO also regularly looks at what is, and isn’t working, and sets new priorities. I was really struggling to use the joystick of my wheelchair. My original provider said my model of chair couldn’t be fitted with head controls. My instinct told me there must be an alternative, and everyone made suggestions and experimented before we found someone with a solution. Now I easily maneuver my wheelchair with head controls.
When it comes to activities of daily living, I also advise being more than a patient. Again, just because you have physical limitations you can still be an active partner. Ok, I have to be very careful about how I present this next part. Rephrase? Even though I try to be more like Dorothy from Kansas, people close to me know I have my wicked witch moments. So the following recommendations are also a reminder to me of what to keep working on. A mutual caregiver was getting frustrated working with Mary because she wanted to help but nothing seemed to please Mary. I tried explaining that there are so many frustrations with ALS, and Mary’s unhappiness was not a reflection of the caregiver’s ability. Caregivers want to help and are very discouraged if they cannot make a positive difference.
My sweetheart does so much for me, and when I thank him for something extra special, he lovingly says that’s his job. One day I was feeling pretty inadequate, that I cannot do anything for him. But then I remembered him saying how it breaks his heart when I’m frustrated and he doesn’t know what I need. He also once said how good he feels when I look contented. By being contented, showing my happiness, and staying calm when I need something, I realized that is the way I can help him and my caregivers. I especially need to keep working on staying calm. If we catch ourselves being ho-hum, we should make an effort to show some enthusiasm. I don’t always have my speech device, but even just smiling and nodding shows we appreciate their efforts.
I’m not saying we need to put up with being uncomfortable or even having things not quite the way we prefer. There are polite ways to ask for help, and I find that people who really care, like to know what makes you happy. The key is to pick one thing to deal with, explain why, and how, you prefer it, and show satisfaction when they remember to do it that way. If we are tired or not in the mood to be nice, we should remind ourselves that they showed up for us, and it’s our job to do whatever we can to help them. Caregivers get tired or down too, and when I think of what they put up with from me, I want to make their job easier. We need to be tuned in to their comfort too. We can find meaningful ways to empathize and create a pleasant environment for our caregivers. We can build in breaks in the schedule, ask if they ate their meal, offer hand lotion, pain cream or whatever, notice when they are hot; you get the idea. When we know our priorities we can let low importance items slide if a caregiver needs a break.
In closing, the real tragedy for Mary was that, as she encountered challenges, the decisions of how to deal with each seemed to cause more frustration and less joy. When you decide and communicate what is important to you, you are defining your vision of how you want to live. You are giving everyone around you clear goals. Loved ones don’t have to struggle to figure out how to make you happy. Being the chief executive officer of your care, is something positive you can do for yourself and others on your team, no matter how your disability evolves.