Another ALS awareness month; I made it!
It is a noise filled world out there. So much so, that our brains are literally wired to filter out most of it. And by "literally", I mean really, really, actually, no bruh srsly. Not the "figuratively" that my kids keep trying to redefine it to. (If Webster's teenagers take over the family business, we're doomed, ain't we.) So much noise. Internet. News. Media. Commercialism. All in contention. All sewing dissension. Bloggers and vloggers all monologuing in tension. With youtubers and tiktok-ers all starved for ascension. Everyone preying on your precious attention. It's almost straight out of a Dr. Seuss book. Remember when spam came in a can? My spam folder, dare I open it in search of lost emails, reminds me of the bathroom stall walls from school or rest stops. Daily robocalls and texts and a snail mail box full of junk ... well, junk and charities. Wow! There are a lot of charities. So much need in the world. I hate to classify charities as junk mail ... but sadly they most often get tossed in the pile with the pre-approved lines of credit and cards, mortgage refinance opportunities, auto insurance savings offers, and the urgent notices of how we're paying too much for our utilities distribution. Not to mention that the car we haven't owned for a decade is about to expire its warranty. We budget our charitable giving, though. So we have our church and some people we sponsor along with other charities that have held special meaning for us. And then just some set aside for those unexpected things that touch our hearts. But we have to let the rest go.
A couple years ago a new charity popped up on our radar. This time, though, they weren't asking for anything from us. Instead, they helped me. And Jane. This was new for me. I had never been in that situation before. But the ALS Association provided information and support group services at a time when we were still just trying not to become completely unglued. I don't know why, but later, as I reflected on the impact that had on me. I couldn't help but think about all the envelopes, that I tossed away, with the pictures of starving children, or those with severe cleft lip. I had always fought conflicting feelings of pity and irritation with those. Irritation at the guilt tactics. .... Now I just say a little prayer for them, and thank God for reminding me of the needs of others and the many blessings bestowed upon me and my family.
I have never cared to endorse causes ... no, "cared" is the wrong word. I've never felt comfortable allowing myself to be vulnerable. To opening up about what really mattered to me. Not even truly confronting tough topics in my own mind ... putting them off ... or outright dismissing them as "not really my problem". I've always been pretty good at telling stories. That helped me in my career. It also helped numb my own internal search for truth. And now here I am benefiting from services of a charity that has meant something to others. Or touched their hearts in some unexpected way.
Friends, Family members, acquaintances, lend me your ears;
I come to bury ALS, not to praise it.
Ahh... Well... The speech breaks down for me after that... I do want to rile you up, however. Though not about the conspiracy to kill Caesar. Ambition should be made of sterner stuff. The ALS Association (ALSA) has ambition. ALSA's ambition is to not be necessary any more. No more need to fight for a cure for, educate people on, or support families dealing with an as yet incurable disease with an average life span of 2-5 years from diagnosis. Have you ever forgotten the date? What if your life depended on it? I don't mean to get morose, and I am not afraid of dying. But what if families with ALS had ANY other prognosis than a steady progression of total paralysis to death by suffocation while being completely aware. Every 90 minutes, someone dies from, or gets diagnosed with ALS. It just is what it is... for now. But we can do something about it. I have personally tried to raise awareness by telling my story on the news as well as sharing it with all of you. I've shared my information on the national ALS registry and am on a waiting list to participate in drug trials in an effort to help further ALS research. And I find ways to help others in the same position I am by being encouraging online and in support group as well as sharing what I can with technology. Now, I am not even a drop in the bucket compared to what ALSA is doing in all of these areas; awareness, research, support. But we can all support organizations like ALSA that battle ALS on several fronts.
In an effort to make this an extremely long post ... and if you've made it this far, you're likely all in ... I want to share the email I sent in order to attempt to restart in person support groups, indoors, last fall. It sums up what ALSA Care Services has meant for me. It's written to Marlin Seymour, Executive Director of The ALS Association Central & Southern Ohio Chapter. I've since exchanged a few emails with her and she is a wholly remarkable woman in her own right. The "Pinky" I reference in the email is Yvonne "Pinky" Dressman. She is the Care Services Coordinator for the Cincinnati area. She is also a key member on Dr. Neel's clinic team. She runs the Cincinnati area support groups among many other things. I can’t say enough about her. She is... Well, read the letter.
Hi Marlin,My name is Kevin Rowland. I am one of the PALS benefiting from some of the awesome work our ALSA chapter is doing. I'm writing you today for 3 main reasons. First to thank you for your tireless service, second to acknowledge Pinky and her equally relentless dedication to our community, and third to make a plea to allow the exchange and support group to meet indoors if weather or darkness become hindrances.Pinky has always spoken very highly of you. And while I've never had the pleasure of meeting or communicating with you directly, I have heard you on some virtual group meetings. Thank you for all you do! I'm betting, although I hope I'm wrong, you don't receive the gratitude you deserve from those of us that benefit from your direction. I can imagine how stressful a position you're in, having to weigh the good of the many with the good of the few. So, know that you and your family are in my prayers, and that I truly appreciate what you're trying to accomplish. I don't always agree with some of ALSA national decisions or direction, but in my book if Pinky vouches for you, that's good enough for me.Pinky is truly one of a kind. Don't get me wrong, there are numerous dedicated, hard working and compassionate people in our chapter, as I'm sure there are in others. But Pinky stands out, for me, and many others. Her devotion to our community is palpable. She benefits from being on the front lines and visible by those she serves. Maybe that's partly why I wanted to recognize your seemingly more behind the scenes service. But needless to say, in the trenches is where so many of us pals and cals benefit daily from the triage of care services. I'm all for research, access to therapies, and a cure. But the front lines are littered with broken people getting their first diagnosis or confronting that new ALS dilemma. Pinky stands in the pit with us like something out of "saving private ryan". I'm sure you're aware of her dedication, and I'm probably not telling you something new. But she is one of us, and adored by many.Support group is critical. It is that triage care that cuts through this disease and exposes the suffering to the humanity that binds us together. It acts as a salve when a new member can find comfort in a compatriot. Or a solution to a problem they didn't even know about yet. Or just that safe place to share with others that understand. Again I'm sure I'm not informing you of anything you don't already know and most likely agree with. But my sense is that the in person meetings allow for so much more sharing, and obviously, facilitate a more familiar, intimate and safe space. I won't presume to speak for everyone in the group but I think my following feelings might resonate with many in the group. I feel that following the Ohio Department of Health guidelines and taking personal responsibility for our own risk, warrants the benefits of being able to meet as a group, in person. Outdoors or indoors. Beyond the isolation of covid, we battle a much larger isolation in an incurable terminal illness. I believe all who choose to participate in group, in person, no matter the venue, are willing to indemnify ALSA, as not liable for any injury that could occur as the result of our meeting. The waivers should suffice. Obviously record keeping as to attendance would be maintained for appropriate contact tracing as mandated. I hope and pray that you consider my plea, and support us with whatever influence you have to continue to allow us to meet, especially as it gets darker and colder both outside and in our fight against both covid and ALS.Thank you ever so much for your kind attention.Kevin Rowland
It turns out that they did, in fact, approve a plan that allowed us to continue to meet in person with precautions in place. Marlin is a big supporter of support group, but of course, had to tread that exhausting tight rope with the benefits of group vs health risks of covid and variants. At any rate, if you're still with me then you're likely the sort of friend that might give serious thought to helping me get the word out about ALS, ALSA, and the need to continue fighting this horrible disease. I, or someone will be putting together walk teams to help raise money for our chapter. That is how you can help me by donating yourself to a walk team. I'll try and get information about what those are soon. Right now, I wanted to share the opportunity to gain corporate sponsorship. If you can help out getting sponsors on board, I would appreciate it. My company, Caesar Creek Software, has already agreed to sponsor the Cincinnati walk at the $10K level! I am humbled and blown away by their generosity. I can't wait to walk with them. So who else will join us? The following are the walk packets describing the benefits of being a sponsor. Please let me know if I can help with any information. Also, Marlin Seymour is available as well. And thank you so much for listening!
Marlin Seymour, Executive Director
mseymour@ALSohio.org 866-273-2572, Ext. 102
Cinci Walk Sponsorship Opportunities
Cols Walk Sponsorship Opportunities
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