tag:blogger.com,1999:blog-3605254543761446258.post5603812017692329742..comments2011-08-15T02:40:46.105-04:00The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-3605254543761446258.post-53607308291051906592011-08-14T00:40:15.512-04:002011-08-14T00:40:15.512-04:00I love this. It&#39;s like. You&#39;ve put MY thoughts to words was again.Nicolehttp://www.mynewnormals.comnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-87419509787951966542010-01-30T11:24:19.076-05:002010-01-30T11:24:19.076-05:00Marc: I so envy your perspective here, your ability to embrace the moment. My friends so envy my freedom to pursue my whims, watch Baseball without guilt, &quot;sit on the dock of the bay&quot;. I cannot seem to embrace this, as i feel that these freedoms are not as sweet when not earned; that time &quot;off&quot; loses its preciousness when it is all you have. I struggle with the loss of sense of purpose. I have no family, so that motivation is also absent for me. I wish I could be injected with your mindset...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-15795696586520458732010-01-18T14:16:45.962-05:002010-01-18T14:16:45.962-05:00Accidentally stumbled upon your blog (first read the Frank McCourt piece, and then read this blog). I don&#39;t have MS, but I think if people would adopt your attitude toward life they would be happier no matter what their situation is. Thanks for contributing by sharing your writing, and I thank God that you have a wife who cares about and for you.Dottienoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-82729305193344789762009-12-09T22:25:22.008-05:002009-12-09T22:25:22.008-05:00@HarknessDWT. I&#39;ve got to get that on a T-Shirt &quot;Last time I checked, MS doesn&#39;t cause ugly.&quot; Fantastic. My chair is metallic grasshoper green. It gets a lot of attention too ;)weeblehttp://www.blogger.com/profile/12422006955957399661noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-61247834124137469042009-12-07T19:38:19.620-05:002009-12-07T19:38:19.620-05:00I stumbled onto your blog while looking for advice on navigating NYC in a wheelchair and I am glad I found your site. I avoid most MS-related sites and activities due to the large number of people who can’t help but feel sorry for themselves. I can’t be around all that noise about how bad things are gonna get. No one likes a whiner! Your honesty and humor are refreshing. I am not about to start singing a happy song about how MS changed my life vision but I am blessed to be surrounded by family and friends who care deeply, would do anything for me and yet pretend they don’t give a crap. I have “rock star” parking not handicapped. My wheelchair is toxic green aka Tinkerbelle green. A sense of humor and not taking myself too seriously has been my best treatment. I still work full time, although I work from home. When I do go to the office one particular person routinely told me that I “look fine” implying nothing is wrong until one day a co-worker said to him, “Last time I checked, MS doesn’t cause ugly.” I literally may not be able to stand on my own two feet and the invisible bees may be stinging my face but MS hasn’t made me ugly inside or out!HarknessDWThttp://openid.aol.com/HarknessDWTnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-59991148639848493122009-08-31T15:18:23.458-04:002009-08-31T15:18:23.458-04:00I know what you mean and agree!<br /><br />But I wonder what you think about social and economic oppression that goes along with living with a disability? This is a super personal question but I wonder how you feel the ways poverty threatens and looms for people with disabilities. I am thinking a fair bit about bigotry and the deep attitudes we have to deal with, not just things like someone staring, but the ways the charity model of dealing with disability affects us.Lizhttp://hackabilityblog.comnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-22292222632782006512009-08-22T03:49:08.114-04:002009-08-22T03:49:08.114-04:00Janet-thanks for the kind words. it helps me to know that there are others out there who share my feelings, so i guess this blog is a mutually beneficial thing. If I can help myself while helping others, that&#39;s definitely a win-win...<br /><br />NYCrun-thanks for dropping by. I checked out your blog, it&#39;s very entertaining. The streets of New York are certainly their own show...<br /><br />jstlookn-well, now I&#39;m blushing. Thanks for appreciating my little attempts at making sense of it all...<br /><br />anillo-I suppose, like all realities, mindfulness is different things to different people. The key I think is quieting both the internal and external chatter so that you can discern and live in the present, rather than cast judgment or allow ghosts of the past or anxieties about the future to throw their shadows on the now. Only in an uncluttered present can one hope to catch glimpses of the essence of &quot;you&quot;, and of your place in the universe. Such moments of understanding are fleeting, but, like the Hokey Pokey, that&#39;s what it&#39;s all about...<br /><br />Karen-when thinking about my X, one of the main elements of my calculations was my rate of progression, and where I thought I would likely be at some future point if the disease progresses unchecked. The MS experience has brought with it some benefits, but at some point my level of disability would overtake any positives those benefits could provide. I have my own mental line in the sand drawn as far as level of disability goes, over which I don&#39;t think I&#39;d care to cross. Based on my rate of progression up until now, I&#39;d say that line may be reached in about 18 months. So, when considering that in 18 months my quality of life may become unacceptable, it seems reasonable to use that number as my X...<br /><br />anonymous-I think &quot;thank you&quot; are two of the most eloquent words a person can speak. So, let me say &quot;thank you&quot; back at you. These words of encouragement both inspire and humble me...The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-91839337909832972812009-08-21T20:59:09.142-04:002009-08-21T20:59:09.142-04:00I agree with centennial if not able to express it as eloquently. What he (or she ) said. THANK YOU!!!!!!!! I also would like to meet you, you are so incredibly able to put into words what so many of us are feeling. You go!!!! Keep going your blog is marvelous, you know like the old song.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-13453284065784023232009-08-21T15:20:12.740-04:002009-08-21T15:20:12.740-04:00Marc, thanks for sharing the positive gains in your life without singing the &quot;I have MS, but MS doesn&#39;t have me&quot; theme song. Nice balance. But am curious how this jives with your X.Bibliotekarenhttp://www.blogger.com/profile/06896112760553996504noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-59614784434549730612009-08-19T00:22:52.811-04:002009-08-19T00:22:52.811-04:00Marc, your words just keep getting better and better. Thank you for sharing your thoughts. You captured the essence of mindfulness without even using the word. It&#39;s something I am trying for in life ever since I got diagnosed with MS, and even when I see the word &quot;mindfulness&quot; I&#39;m not sure I really know what it is. But your recent musings have had a soothing effect and I think I&#39;m seeing it now...it&#39;s a little clearer.anillohttp://www.blogger.com/profile/18061706150109358761noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-29808486990080652212009-08-18T16:55:29.771-04:002009-08-18T16:55:29.771-04:00Marc..I fall in love with you and your words, over and over again each time I read your posts.<br />What a guy...what a guy...<br />Thanks for all you share in your journey through life on wheels.<br />jstlooknJstlookn333http://www.blogger.com/profile/16898411978024345944noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-74311392281298414772009-08-17T22:17:30.045-04:002009-08-17T22:17:30.045-04:00i agree as well<br />http://nycrunfashion.blogspot.comnycrunhttp://www.blogger.com/profile/16199556743234557902noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-92002779671548589332009-08-17T20:19:46.108-04:002009-08-17T20:19:46.108-04:00great site, write a book.my daugther 39 has ms with mostly brainstem lesions.<br />we need wheelchair/powerchair adviseAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-44623140185236198672009-08-17T17:01:23.614-04:002009-08-17T17:01:23.614-04:00Marc....i come here all the time and am constantly nodding my head in agreement with you. Sometimes laughing with you, sometimes crying with you. Always amazed that you say what i often think. But this time, you hit the nail on the head my friend. Thanks for sharing your journey with all of us, your an amazing talent. JanetAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-83394764180897435772009-08-17T11:49:57.574-04:002009-08-17T11:49:57.574-04:00Once again, I&#39;d like to thank everyone for their extremely thoughtful and provocative comments. I am truly humbled by the responses many of my post get.<br /><br />Michelle-I too found the wheelchair to be strangely liberating, not only physically, but emotionally as well. After denying my need for one for so long, when the wheelchair finally became a reality, my world expanded exponentially. And, between you and me, the thing&#39;s actually a hoot to drive...<br /><br />Centennial-your heartfelt words really choked me up. I&#39;m so happy that I&#39;m able to give voice to the feelings that so many of us grapple with.<br /><br />Weeble-yes, my friend, the key is living in the moment. Easier said than done, but the effort is definitely worth the reward. And I think that your attitude is definitely reflected in those around you...<br /><br />Michelle-thanks for the kind words. Someone once told me that inside every 50-year-old there is an 18-year-old screaming WTF, and I don&#39;t think you need to be 50 years old to understand exactly how true that is. Glad to hear that the old you that you rediscovered is way cool. Makes it that much more pleasant to hang out with yourself...<br /><br />Mitch-I&#39;m honored that you&#39;ve cited me as an inspiration for your own blogging, and as a help in coming to terms with your leaving work. The transition is not easy, but you could very well find yourself much more gratified in your new life and you ever thought you could be. If the early posts on your new blog are any indication, I&#39;m sure many people will find your words filled with wisdom and camaraderie.<br /><br />pfrox9-I&#39;m so sorry that you&#39;ve had to deal with this crap at such a young age, but the wisdom and bravery you display are inspirational. Your attitude is terrific, and will help you greatly in dealing with this damn thing. Being your age is hard enough without having to wrestle with chronic illness. You should be rewarded a medal of valor, and a few battle stars to boot... <br /><br />Anita-thank you for your heartfelt response. Indeed, if we spend our time crying about the negatives, we only waste the precious here and now. Mourning your losses and feeling glum are part of the package we&#39;ve been handed, but as the old song said, you&#39;ve got to accentuate the positive, and eliminate the negative, as best you can...<br /><br />anonymous-it truly is a shame that it takes illness to enlighten us. I&#39;m hopeful that my example will help my healthy friends to reach a similar understanding without having to undergo having a serious illness.<br /><br />Kicker-wise words indeed, and I agree with you that pfrox9 will make a grand adult.<br /><br />Melinda-the decision to go on disability is an incredibly hard one. At some point, you simply must listen to your body when it&#39;s telling you that enough is enough. There is no sense in being a martyr, you&#39;ve got to place your own physical well-being as your highest priority. Good luck as you move through the decision-making process.The Wheelchair Kamikazehttp://www.blogger.com/profile/13897021799119917541noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-11410376759956661522009-08-16T21:13:47.082-04:002009-08-16T21:13:47.082-04:00So well said. I hsve been struggling with the decision about when to go on disability (I hsve PPMS). Your insights made me realize that it might be a positive next step. Thanks! <br /><br />MelindaMelindahttp://www.blogger.com/profile/04059069463814983523noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-44008147941970568452009-08-16T09:25:53.009-04:002009-08-16T09:25:53.009-04:00pfrox9- I see my 17 year olds (boy-girl twins) who are ok physically, in the mid-stream popularity wise in High School, remember back myself have many unwritten rules High School had, thought it was IT, but finally know now it was just a blip in life, but it does leave scars, anyway I have nothing but admiration for you making your journey with such awareness. You will be a good adult. <br /><br />kickerAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-56038323628312127032009-08-16T09:10:21.140-04:002009-08-16T09:10:21.140-04:00Well said Marc. It&#39;s a shame it takes such an illness to make us truly see what&#39;s important. It&#39;s like being given a chance to experience the world from two entirely different perspectives.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-4438687077667479162009-08-15T15:39:28.880-04:002009-08-15T15:39:28.880-04:00Again, as so many other times that I have read your blog, I am in awe of your ability to express so well your day to day reality, and the good and bad that come along with MS. What a blessing that you have received through your ability to look at those things you have GAINED from having some of the things you have lost! Every time I read a post, it makes me feel more capable of finding those things within myself. I especially loved the part (the very REAL part) about how MS does have you! But even if MS has us, and even if things must change in our life, it is best when we can see the positives in the changes then lie our heads down and cry constantly over all the negatives.Anitahttp://www.blogger.com/profile/10452652026672510717noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-15580904441526324272009-08-14T23:19:22.031-04:002009-08-14T23:19:22.031-04:00Bravo Marc. Wonderful blog entry.<br /><br />it has been a challenge going through high school with this monster. not because of any physical problems i have, i have been blessed that physical limtations have ony startd to come up, and my cognitive issuses are been mild. but the challenge is seeing the world through different eyes than most others my age.<br /><br />the eyes that i see through also have been a blessing. it is just hard to explain to another 18/19 year old what you see that is differentpfrox9http://openid.aol.com/pfrox9noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-66004024940927537492009-08-14T17:42:33.241-04:002009-08-14T17:42:33.241-04:00Great stuff Marc. I&#39;ve been out of the workforce for almost 3 months now. Getting MS was one adjustment, but I think going on disability is a bigger one. As you wrote- old dreams now seem frivolous, and old obligations not nearly as important. It&#39;s time to close ranks in one sense, not wasting time on people and events that are not highly important. But it is also time to open ranks to those in the world who we now have something in common with- the disabled community. Sounds like you have been doing both, and now I&#39;m starting to as well. This post has helped me clarify my direction.Enjoying the Ridehttp://www.blogger.com/profile/05043136383875458616noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-32067312462374325452009-08-14T11:23:31.389-04:002009-08-14T11:23:31.389-04:00Marc, I have become a loyal reader not because I have MS (I have MD) but because you write about the subtle but profound things that affect my life also. I had to retire from working 2 years ago and I experienced (and still am experiencing) the very thing you wrote about in this blog. After shedding the working life mentality, I found myself looping back in time and re-discovering the person I used to be before &quot;adulthood&quot; and &quot;taking care of business&quot; set in. I was amazed to find she still existed and that she was way cooler than I remembered!<br /><br />MichelleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-31253376241517178202009-08-14T10:16:42.281-04:002009-08-14T10:16:42.281-04:00Wonderful blog today Marc. I agree that I cannot choose what my body presents me today, but I can choose what I do with it. If I&#39;m confined to bed, or my home, or my chair I can still choose try to be content in my mind. find pleasure in the sights, sounds, or people around me.<br /><br />This is my practice. Practice meaning some days I Get an A+ on the day and others an F. Just means I have to practice more. Without this way of thinking, I would be desolate. It&#39;s what works for me. I think it helps those around me too.weeblehttp://www.blogger.com/profile/12422006955957399661noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-37983225677496664112009-08-14T00:04:32.343-04:002009-08-14T00:04:32.343-04:00Even if you didn&#39;t have MS, I would not only be pleased, but also honored to meet you Marc. You really have a way of bringing to the surface a profound mixture of chuckles, tears, gratitude and hope buried within my soul. I can&#39;t tell you enough how meaningful and emotionally satisfying your blog is to me, and, I&#39;m sure I speak for the vast majority of your followers.centennielhttp://www.blogger.com/profile/16897312065662144491noreply@blogger.comtag:blogger.com,1999:blog-3605254543761446258.post-5120538004755607872009-08-13T23:25:59.777-04:002009-08-13T23:25:59.777-04:00Great post Marc. You so elequently and succinctly say what I feel...all to often. Having no cogitive issues and only physical ones allows me to still be me. Ironically, being confined to a wheelchair is liberating. <br /><br />Bestadmom MichelleAnonymousnoreply@blogger.com