Jami McCashland Smith, diagnosed in September of 2011 at age 38.

As I sit here starting to write about myself, I must tell you where I’m at—and why. I’m very much an open book when it comes to myself. I’m currently sitting on the toilet, having a major hot flash. I’ve found the bathroom to be the best place to be when I’m having a hot flash. The lights are off, the thermostat is set at 70 degrees, and the vent is conveniently located near the toilet. I feel like I’m in a freezer, and right now it feels so good.

I’m 41 years old and I’m going through a medically induced menopause. I was scheduled to have a hysterectomy back in June 2014, but a few days before the big day, it was cancelled. My team of experts (2 gynecologists, my ALS neurologist, and the anesthesiologist) decided it would be too dangerous to go through with the surgery, and that Lupron injections would be the best route for me. So, I had 1 injection for 6 months and they have been successful, except for the dreadful hot flashes. While dealing with hot flashes, I’m dealing with ALS, too.

Most people know me as Jami McCashland, Mrs. McCashland, or Ms. McCashland. Not a lot of people know me as Jami Smith or Mrs. Smith. I earned the Smith name in June 2012.

I was born and raised in Indiana, the Hoosier state. I was married for 13 years to Gary McCashland, who was from my hometown of Liberty, Indiana. I worked at Liberty Elementary School for 14 years. My first year working there I was a paraprofessional (fancy word for classroom assistant or aide). The other 13 years I spent molding the minds of 5- and 6-year-olds. I was a kindergarten teacher!

As a kindergarten teacher, I was known as Mrs. McCashland. I was given the task of giving children a great start in education and helping them build a strong foundation for the love of learning. I always thought that kindergarten teachers could make or break a child when it came to school. I wanted my students to love school and love learning. There’s no single recipe that works for every child or every class of students. Kindergartners can be lovable, huggable, kind, sweet, unruly, and unpredictable. I had to be prepared to manage a classroom full of unique personalities, and to interact with families, parents and the community. At times, I was a voice for the children. Being a kindergarten teacher meant extending my time and my finances to make a difference, even if it was a small difference. It meant reminding myself that I was making a difference when I was beyond exhausted, when times were tough, and my efforts seemed to go unnoticed. With each new school year came new challenges, but also new victories. Being a kindergarten teacher meant living, loving, playing, pretending, and of course teaching. I was blessed to be a part of so many lives. Being a kindergarten teacher for 13 years was my passion. As Mrs. McCashland, I wouldn’t have children of my own. Why, one might ask? My students were my children!

My husband and I divorced after 13 years of marriage. We worked different shifts and our relationship became more like friends or housemates. We remain friends, and he donates every year in my honor to the ALS Walk. That’s how I obtained the name Ms. McCashland.

After being single for a while, and dating here and there, I decided to try E-Harmony. That’s how I became Mrs. Smith. I was matched with Phil Smith over 6 years ago. He eventually proposed to me and I said YES! The only issue was that he lived in Kentucky and I lived in Indiana. The distance between us was about 2 hours. We made it work! So, how did I end up in Kentucky? That’s easy. Phil had a daughter, Courtney, who was finishing up her third grade year and Phil and his ex-wife had custody arrangements that worked for them. I prayed about the situation and took the leap of faith. My family was all back in Liberty, but I didn’t have a child involved. I could always drive back to see my family and friends. So, I relocated after securing a teaching job. I was now going to teach third grade. What a BIG difference! I absolutely loved teaching third grade! The third graders loved to be read to, sing and dance to silly songs, and still loved learning like kindergarten students.

While I was creating my resume, putting together a digital portfolio, and filling out online applications for teaching positions, signs of ALS started showing. I just wasn’t aware of them. My hands and arms starting cramping severely. I would have to pry my hands open while pains were shooting up my arms. I assumed all of it was due to preparing for a job. I though it might be arthritis. That was in 2010.

Once I moved to Kentucky and was teaching third grade, I found a family doctor. During my first visit he verified that I had arthritis. I started taking the prescribed medication, but it didn’t seem to be helping. I knew that I would discuss this with him at my next visit.

I also got InvisAlign Braces in 2011. My teeth were looking “oh so good”, but I noticed that my speech was different. In fact, I was slurring some of my words. I assumed that it was because my teeth were moving and my tongue was hitting my mouth in locations that it wasn’t use to in order to pronounce the words. I was so sure of it that I started cursing the braces and telling people I didn’t recommend them at all. I was going to discuss this with my dentist on my next visit, and I did. He informed me that I was the only patient that he had that ever had this issue. Lucky me!

I made an appointment with my family physician and we discussed my arthritis medication and my slurred speech. While he was examining me, he told me that I had atrophy in my hands. I had no clue what that meant. He told me he suspected that I had multiple sclerosis. He asked if I would be willing to be admitted to the local hospital for testing. He told me if I was admitted, all the tests could be done in one place and I wouldn’t have to run around getting them done. I agreed and called my fiancé to let him know what was going on. I bawled the entire way to the hospital.

Once admitted, the battery of testing began, along with blood withdrawals. A neurologist came to exam me and told me that an MRI would be the key in determining if I had MS. He would visit me again when the results were in. Meanwhile, I would have x-rays taken, Barium Swallowing Test, a few walks up and down the hallway and steps with a PT, and a visit with with an OT and speech therapist.

The neurologist came back and told Phil and me that the MRI showed that I didn’t have MS. He ordered an EMG. He mentioned ALS, but he said he didn’t suspect that I had it because of my age and gender. We were so happy! I knew all about ALS and its nightmares. I was kept overnight in order to get the EMG the next day. What a test it was! I mean seriously, you want to stick a needle on my tongue? Are you crazy? It wasn’t as bad as I imagined in my mind.

This is what I tell people about ALS. ALS sucks! My progression is slower than others. I will have been diagnosed with ALS for 4 years in September. Phil and I were shocked at the diagnosis because I was given a different diagnosis when I left the hospital after having a battery of tests completed. I was told that with a few steroid shots that I would get better. However, I was to follow-up with a specialist at U.C. I remember the specialist asking Phil to have a seat after introductions were made. The specialist delivered the devastating news, informing us that the other neurologist suspected ALS, but didn’t want to tell us in case he wasn’t correct. We were numb and I felt like I had been punched in the gut! So did Phil! I just bawled and bawled and Phil just held me tighter and tighter. Bless his heart!

When we left the neurologist that day, I texted a few close friends on the way home and told them about the diagnosis. I asked them not to say anything until my family had been told. I knew my dad would be calling me to ask about my appointment. That was one phone call I was dreading! I collected myself together and called him before he could call me. It was horrible!

Our annual school carnival was the next day (Saturday) and I was determined to work my shift…and I did. After my shift was over, the principal, Julie Hubbard, asked me if I would talk to her in her office. We hugged and cried for I don’t know how long. She asked me what she could do for me. What could the staff do for me? I just asked her not to check my lesson plans or my learning targets for the week. I remember that she laughed and laughed because that’s all I wanted. Phil and I went to the Bengals’ game the next day. It was normal, but I was numb. I came home from the game and completed my lesson plans and learning targets. I needed normalcy! I needed my routine! I needed to stay busy! I needed to teach! I needed the numbness to go away!

Fast forward to today: My arms are very heavy these days. I can still lift them, but not that long or high. I use a walker in the house to walk to the bathroom and back to my lift chair. I’m wheelchair bound when we go out and about. The wheelchair cost around $37,000. Can you believe that??? Thankfully, Phil’s insurance covered it all! My speech has deteriorated so much. It’s really hard for others to understand me. C.J., my stepdaughter, understands me the best. I have no shame in letting you know that I can no longer wipe my own biscuit or shower on my own. The longest I’ve waited on the toilet for Phil to get home has been close to 4 hours. I hope you smiled at that because I still have my sense of humor. (Some of you are probably saying that I just gave too much information. You’re probably correct, but that is part of ALS.) I have high anxiety and depression. Thank goodness for Xanax and Lexapro! I have good days and bad days.

Thankfully, I’m still able to stay at home by myself and our 3 dogs. When or if the time comes that I can’t stay here alone, I will be going to an adult day care. Let me tell you that there are many characters there!!! Again, if and when the time comes, I will get a feeding tube. I have decided to only use it for medication. That might change in the future. I think it will depend on how ambulatory I am. I don’t want to be a burden to my family. I know my family won’t feel that I’m a burden, but I will. Insurance doesn’t cover home healthcare and it is really expensive!

One of my friends visited me not too long ago. He asked me what the hardest part of having ALS was for me. I told him that it was definitely the anxiety, but it was also not remembering me. The “me” I knew seems like a distant memory. People tell me that I’m their inspiration or hero, that I’m brave, strong, and courageous. While I’m proud of what they say about me, I feel like I’m none of those. Truth be told, I’m terrified of ALS.

I truly believe that everything happens for a reason. At times I wish I knew why I was chosen to have ALS, but I know it doesn’t work that way. Phil and I strongly believe that God is watching over us and will guide us and provide for us through this journey. We are standing on the promises of God!

My husband, Phil, is my rock! Instead of running from me when he was my fiancé and heard of my diagnosis, he ran towards me and embraced me. I’m one lucky gal! We were married in June 2012.

I always try to plan ahead. My funeral has been paid for and planned (since Spring Break 2012). Obituary has been written. I didn’t want my family to have to deal with those things. I learned two important things while planning a funeral.

1. Don’t take your parents with you to help you plan. Thanks to my dad, my funeral cost me more than I wanted to spend.
2. Yes ladies, your bra supports you the same way when you’re deceased as it does when you’re alive.

That’s my story in a nutshell! In case you’re wondering…I left the bathroom days ago.