Build with what you have

Building with LEGOs often results in an interesting quandary: the more one builds, the fewer pieces you have left in the collection, no matter how carefully they might be organized for easy retrieval.

Living with a chronic, progressive, debilitating disease like multiple sclerosis is a lot like that. It can be described as “the gift that keeps on taking.” Ones strength, cognitive resources, coordination and stamina are all taken away slowly but surely…sometimes even quite abruptly.

Yet, we are all called to “build” something meaningful with our lives. None of us have the same set of pieces, and although we may try to get more through education, hard work and creativity, there are always limits.

My life as a clinical neuropsychologist ended when I got a severe form of progressive MS. It was devastating. I’d worked very long and hard to create a life I thought was meaningful, and it was taken away. I was left to “pick up the pieces” and start over with “plan B.”

My “plan B” included moving from Miami, FL to Jackson, MS to be closer to family. It didn’t take long, however, to realize that I was needed here. You see, none of the buses in Jackson were wheelchair accessible. The lifts had been poorly maintained and none of them actually worked. The sidewalks and bus stops were either non-existent or inaccessible. To make a long story short, it became obvious that Mississippi hadn’t implemented the Americans with Disabilities Act, that was signed into law in 1990, and went into effect in 1992. 

There’s a mantra in the disability community: educate or litigate. I much prefer the former, and did my best to educate and encourage compliance. Unfortunately, it hasn’t always been enough. In this instance, it took litigation in Federal Court to motivate system-wide transportation reform.

There’s another important mantra in the disability community: nothing about us without us. So, people throughout Jackson’s disability community formed an ADA Advisory Council that offers free advice and guidance as we work to remove barriers to full inclusion, and move closer to a city that welcomes everyone, including those with disabilities.

Lastly, I built an ideal city called “LEGO Jackson” which goes on display each year at the Arts Center of Mississippi. LEGO Jackson grows in size and popularity each year and inspires children and adults alike to take care of their neighbors, their homes, and their city. This year’s addition: LEGO Jackson Hospital complete with physical therapists, MRI machines, and scientists!

I now have a lot fewer “pieces” than I had before. MS affects my cognition, although most people do not notice. Chronic exhaustion limits what I do despite my workaholic personality. Some days it is hard to get out of bed, and it is always a struggle to speak loud enough to be heard (my vocal cords are paralyzed).

There are very few things that I’m absolutely certain of, but one of them is that we are all tasked with creating something meaningful with what we have available. In order to make something happen, you have to be able to imagine it first. Part of it is to show people we can make this happen. We have to roll up our sleeves and try, but we can do this.

Remember, in life, we are asked to build something meaningful using fewer pieces than we wish we had.

Be creative. Keep building. Never stop.

Tags Activism & Advocacy, Progressive MS      12 Appreciate this
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Scott Crawford, PhD

Scott Crawford is a retired neuropsychologist and creator of LEGO Jackson. He has lived with primary progressive MS since 1999 (formally diagnosed in 2002) and resides in Jackson, MS where he serves as Co-Chair of the Government Relations Committee for the National Multiple Sclerosis Society of Alabama and Mississippi. Dr. Crawford was inducted into the National MS Society Advocacy Hall of Fame in 2014. 

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  • Tiffani   Jan 16, 2015 10:07 AM
    "Build with what you have"; that makes so much sense, and for so many situations! Thank you for the great message and article.

    I've gotta be a geek for a minute, because LEGOs always make me smile, and looking at the opening picture, I have questions I'm sure you've been asked many times:
    Did you build based off pictures of those places/buildings?
    Did you build all that on-site?
    How long did all that take you to complete?? It's a huge display!
    May I have a tour of your city?
    And, of course, the ever-popular: how many LEGO pieces are there? :)

    Thanks again, and enjoy your day!
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    SCrawford4  Jan 16, 2015 1:02 PM
    Hi Tiffani,
    The authentic buildings are of my own design based on photographs I take of the building from every angle. I build at home, pack it up in boxes, and bring it once a year to the Arts Center where I have some help on the first day of set-up. It takes a WEEK to set up every detail, but only 3 hours to take down! :) I'm guessing there's AT LEAST 200,000 Bricks. Maybe more. The big buildings, Standard Life, Hospital, Bailey APAC School, take 6 months EACH to design and build.
  • Avatar
    SCrawford4  Jan 16, 2015 1:06 PM
    Oh, I took FIVE YEARS to build the whole thing...shows the month of December through Mid-January here in Jackson, Mississippi at the Arts Center of Mississippi (201 East Pascagoula Street, Jackson, MS). Each year I add to it, so every year it gets bigger and better. The first year it took up only six tables...this year (5th year) it took SIXTEEN Tables. There's a FACEBOOK page of LEGO Jackson:
  • Avatar
    Glassgirl  Jan 16, 2015 1:23 PM
    Loved your bit of philosophy: "Remember, in life, we are asked to build something meaningful using fewer pieces than we wish we had." You really summed up what our life is all about, and we should keep striving even with fewer pieces. Thanks!
  • Avatar
    Constance56  Jan 16, 2015 1:38 PM
    Thanks for sharing. I, too, have PPMS, and rarely hear stories of those who do. I've had little energy of late so your piece is inspirational.
  • Janette McGowen   Jan 16, 2015 2:25 PM
    Very inspirational article. I got diagnosed with PPMS
  • Janette McGowen   Jan 16, 2015 2:25 PM
    Very inspirational article. I got diagnosed with PPMS
  • Avatar
    mser1986  Jan 16, 2015 3:20 PM
    I have Secondary Progressive MS. I get really aggravated when my doctor tells me they don't treat this form of MS. Your creativity is awesome!
  • Janette McGowen   Jan 16, 2015 4:14 PM
    Very inspirational article. I got diagnosed with PPMS IN 2012. (Sorry about the previous posts. I hit "enter too quickly. :) ) There is very little said about PPMS, so this was encouraging to me. Your Lego building is awesome! Congratulations!
  • Tom   Jan 16, 2015 4:47 PM
    Scott: You have used LEGOs to build an amazing teaching tool to educate your community. I applaud your determination and creativity.
  • Judy McNeil   Jan 16, 2015 8:30 PM
    I am constantly inspired and proud of my son. He is here for a reason. He is making a real difference in Jackson and in the lives of the people who live here. Carry on Scott. Love you, Mom
  • Clive   Jan 17, 2015 9:08 AM
    Thank you for sharing this article what is being said is very true
  • Irma Beeler   Jan 17, 2015 11:28 AM
    Very encouraging post. Your descriptions of working w fewer pieces, are spot on. Just keep going and accomplishing what you can each day. I was Dx in 2009, with many signs years before that. Being a cardiac nurse was no longer in my cards by 2012. I try my old hobbies, as I haven't been able to learn new ones.
    I feel connected to others w M.S. Thank you.
  • Gerri Ballas   Jan 18, 2015 8:26 PM
    How so well said. You are an inspiration to many if not all that accomplishments can be made no matter what your health situation, be it large or small. We are all given challenges in life and with the help of God, family and friends we manage to overcome many obstacles.
    Faith and trust in God to direct my path is the way I survive MS. Thank you again for your inspirational message.
  • donnakaufmann  Feb 6, 2015 11:06 AM
    Thank you for your very positive message. My dream is to use the pieces for repair! It is the next step to add to this very compled puzzle! 👍
  • mhinze07  Feb 6, 2015 6:43 PM
    You are doing great work for the MS community as well as all those who have no other options but public transportation. Keep on moving!
  • Ann   Jul 27, 2015 8:23 PM
    Thank you Scott for your article. Very inspirational! Thanks for sharing.
  • Marlene Richardson   Jul 28, 2015 6:47 AM
    Your story is very encouraging to me.
    I contacted the MS organization in Arkansas
    about being an ambassador and they ignore me.
    That can make anyone with MS feel bad. There are people
    running the organization who doesn't have MS...
  • Excadet  Feb 25, 2016 8:50 AM
    Wow, Dr. Crawford! Your story really struck a nerve with me (no pun intended). I don't have nearly as much education as you, but I am a (I guess?) retired CPA. I was working at the best job (both in terms of pay and interesting challenges) I'd ever had. A series of setbacks occurred over the course of less than a year, and I continued to worsen, leading to my leaving that job on disability in November 2013. This was followed by a move across the country 5 months later, so there are many similarities with your experience.

    The thing that got me was the difficulties with accessibility! Like you, I made the erroneous assumption that the ADA became law in 1990; there should be no problems, right? Wrong! I contacted the Indiana agency about a salon where I go. I had asked my stylist if the salon owner also owned the building and was told that she did not. It has been well over 6 months since I filed my complaint about an insufficient number of handicapped-accessible parking spaces and STILL nothing has been done. Before the organization would do anything at all, I had to sign a legal release. As far as I can tell, all that has happened is that a guy from Indianapolis took measurements at the parking lot (he was new and had to do it twice), a couple of letters have been sent to the salon owner, and that's it! It is just unbelievable to me! As you likely know, every state is tasked with implementing and enforcing the ADA. I am so disappointed by the way it's been done. I feel cheated and deeply discouraged.

    I apologize: I hadn't intended to go on a rant! How ironic is it that here I am, a pretty well-educated, capable person, but with my sudden and greatly increased disability, I am far less equipped to challenge things that I really need? I'm quite sure that I am not the only person affected by this kind of stuff! Thanks for your advocacy. If you have time, any tips about how to effect change would be greatly appreciated!
  • Kimberly   Jun 21, 2016 9:27 AM
    Very inspiring!! I would like to know how I may make contact with Dr. Crawford.

    Thank you.