Tag Archives: fundraiser walks

NF Awareness Month

Well, it came and went–May, as I forgot and was reminded yesterday–was NF Awareness month. It was also Autism Awareness month. I don’t find it necessary to tell you facts or stories of NF–you have already read my blog entries. So, I will end this NF Awareness month with something different–none of the talk, such as, “This is a side effect of medicine or tumor function;” But talk of living life with NF2–because, I will tell you plain, it has, is and will continue to change my life.

Once in a conversation with my friend Jess, we discussed our thoughts and feelings about the topic of researchers finding a cure for our disease. I thought about it for a long time and finally responded to her email, saying that I cannot imagine life without it. Please don’t consider me a strong person, because if anything, this disease knocks you down. There are more moments were I detest my own body, wishing that I was something more rather than being thankful for what I have–in other words, as my body continues to unwind, I feel left behind.

Yet looking back at the road thus far, I am aware that life has been filled with divine moments. Moments where God met me in my lowest state and helped me back to my feet, never leaving me behind. And so life continues–to the end, which is the beginning of Life.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4

PS. I believe that God has given doctors and researchers the skills, resources and knowledge to help individuals suffering with illnesses, such as myself. Although at the current moment, there are no treatment options available for me, I still desire to walk with hope in the Cincinnati NF Walk, June 22nd, and support the further research of NF, along with those persons in which the research impacts through results, such as new treatments. If you would like to donate for this cause, there is still time: Team A Mile in Mel’s Shoes


Filed under Adjusting to NF2, Paintings, Uncategorized

NF Walk 2014

Last summer, I had the opportunity to take part in the Children’s Tumor Foundation NF Walk. This fundraiser walk proceeds funding for continued awareness and research about the disease, as well as treatments for those individuals living with either NF1 or NF2. The Children’s Tumor Foundation selects cities across the states and holds this event all throughout the summer. Last summer, I got the information for the walk taking place in Cincinnati. It was more a spontaneous decision, but I was very humbled by all the support we quickly raised.

Participating in the walk was very special. At that point in time, I knew my options for treatments were getting slim, but never imagined the upcoming year that lay ahead of me. So while we were waiting for the walk to begin, we chatted with some other participants, who all had NF1. I was not surprised…I actually think that I was the only NF2 person there. Sitting down for a few minutes, Melissa came with the idea to write why we were taking part in the walk:


When I learned that the NF Walk would again be in Cincinnati this coming June, I knew I would want to participate. Last year it took me an hour to walk the two-mile course…I used my walking sticks and towards the last stretch, depended on the arms of my sister and aunt. This year, my plan is to push a wheelchair–when I no longer have energy and need to rest, I will depend on someone else to help me to the finish point..walking the second mile.


My Team name is”A Mile in Mel’s Shoes.” Through this blog, you have experienced the journey right alongside me–the sorrows and heartaches, questions and pondering thoughts, cheerfulness and laughter. Unlike the set course of the NF Walk, the next mile in my life is uncharted. It is a walk of faith. You have walked the first mile in my shoes–and I know you will be there, ready to continue walking another.

Linked below is the website for Team “A Mile in Mel’s Shoes.” If you are interested in joining me, my parents and two best friends since grade-school (coming for a weekend visit! 🙂 ), click on the “Join my team” button for registration. If you would like to give in donations, please select “Donate now.” You can also donate to a team member’s personal page (names are listed at the bottom of the Team page), where comments can also be written. All donations given on either goes towards the team goal.

Click here for link: Team A Mile in Mel’s Shoes 

If you would like to send a donation by check, please send it to the following address:

Children’s Tumor Foundation

120 Wall Street, 16th Floor

New York, NY 10005-3904

– – –

Thank you for walking with me. The journey continues, one step at a time.


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Filed under Adjusting to NF2, Books and Movies, Family Times

Two Ways to Exercise

This morning, my exercise routine was vastly different from what I participated in on Saturday morning: this morning was the gym; Saturday was a two-mile Fun Walk through Xenia to support the Miami Valley Women’s Center. Two ways to exercise–two ways to view life.

I have taken up exercising at the gym here in town. It’s indoor track is smooth with lanes so I can practice walking in a straighter line than what I do on the bike path. There is too much freedom on the bike path; I wobble uncontrollably all over the path. It is not only is frustrating for myself, but I am sure for the bikers or rollerbladers who are coming up behind me, ready to fly past. Thus, I can, but I resolved not to, walk the bike path alone.

And even when I do walk the bike path with someone, I take my walking sticks that I termed, “rod and staff” (Psalm 23:4). Who would have known that these trusty metal sticks would be the extra pair of legs that I need most often when I walk outdoors? They traveled all throughout Greece, hiked mountains in Colorado and now trod flat bike paths, occasional treks through our 3-acres of grass in the early morning or through town on the rough terrain otherwise known as the sidewalk. You can see why I have decided to take up the gym…it is conveniently safe, air-conditioned, and a time of socialness with the senior citizens of town.

At the gym, I usually walk around the indoor track–maybe a half mile or so–then use the stationary bike. It is like multitasking. I bike and read at the same time! In fact, I think I get more exercise this way, because I get lost in my book that I forget to check how long or how many miles I have been pedaling. I have also taken to the bike, because my left leg is now numb. Not that it affects anything other than just feeling like “muscle stiffness,” but being on the bike gives my ankles a rest: It gives my right ankle a rest from twisting and it gives my left leg a rest from taking the weight that the right ankle should carry on its own. The bike gives my back a rest from the “S” posture that the tumors are causing; and it gives my neck a break from tirelessly trying to hold itself in an upright position. When I bike, I rest.

Contrast to Saturday. It was hot, humid and threatening to rain. I was up early so I could eat a solid breakfast and grab a cup of coffee before heading out. I made sure I had everything (like my own little First Aid kit)–rod and staff, an apple, a SoBe Life water, my baseball hat, band aids, my registration papers and pledge money, and a tiny wallet with medical information papers/driver’s license. All checked and ready to go! I get to the Women’s Center in plenty of time to park, get in and out of the registration before lines start piling up and grab a cup of orange juice while making casual conversation with the volunteer at the table. I was excited. I had only ever been on committees to coordinate events like this or volunteered otherwise at the big 5k events.

I did not know what to expect really. All I knew is that I was determined to walk the full two miles. That might sound ridiculous (it is only two miles!), but considering two nights prior I could hardly walk a mile on the bike path with my parents as my neck was causing me so much strain, standing upright hurt to almost breathe…I literally strained everything on my rod and staff to make it back to the car. Good workout and I fell asleep fast that night when I got in bed, but I quickly reminded myself that there was a reason why I exercised in the morning rather than the evening: my body has more energy, better posture, better mental determination. I have to admit, I like being a morning person. 🙂

I get nervous when I walk around a crowd with my rod and staff. They help me maintain my balance, but they sometimes cause problems. Luckily, I did not trip anyone as we got started, but I did accidentally hit a lady’s ankle from behind…must have felt like a shopping cart hitting your ankle sort of feeling. I felt horrible. She did not turn around but I called out a sincere apology anyway. We get going around the first block and my mind is already thinking that they are going to take us to the bike path and then we follow a trail there and then turn and come back. I mean, after all, with all these kids and baby carriages that would be the safest route.

Nope. We end up trekking through the busiest streets of town on the roughest sidewalks–past McDonald’s, Taco Bell and Wendy’s drive-thru intersections and more. This was NOT what I was expecting. We get about a mile down and I am walking by myself, which I enjoyed. The “trail” was only marked by little signs that had arrows, but I could see the walkers in front of me by a few hundred feet so I was not lagging too far behind. A small family caught up with me by the time I rounded the main intersection in town. We exchanged a few words and they continued on after I stopped to use the restroom.

When I came out, there was a large group of families with baby strollers making their way back so I joined, but found myself feeling like my rod and staff and wavering balance were getting in the way so I passed and walked a bit quicker to the next light where I ended up having to wait to cross the street. A different group caught up with me at this point and when the light said we could go, I was in the front. I started to feel pressure–I am not claustrophobic but when people follow me, I feel their eyes watching my ankles and I get nervous…which I am sure is all just in my head, but as I get up to the next curb not only do I feel this nervousness, but also the sidewalk is now slanted to the right (Why? I have no clue!) I tried to regain my balance as I felt myself starting to shift downwards but ended up landing gracefully in the bush instead. I tried to get myself up, but was having a hard time with my rod and staff flying in different directions and the slanted sidewalk. I feel a hand grasp my left elbow which helps me get up. I give a big thanks then add, “At least I fell in the bush”–while thinking it was genius that I had packed those band aids just in case I had a worse fall.

The last quarter-mile was this uphill, slanted, cracked sidewalk journey that made me start to wish that I was just done. That is when I decided to think of other things. I thought of how some days in life seemed like this walk–full of dangers at the intersections, rough terrains, heat and sweat like trials and tears–not like my safe, air-conditioned gym. I don’t know why the two miles caused my body to react all weekend in the way that it did, but I do know that crossing the finish line seemed victorious; my apple on the way home seemed sweeter; my Saturday afternoon of reading with my feet propped up seemed more relaxing; and my nap yesterday afternoon was a deep satisfying sleep.

I will still exercise in the gym, but I now have a greater appreciation for what it provides. Just as in life–there will be pain, but it will give me a greater appreciation for the days I have been given rest; there will be tears, but it will give me a greater appreciation for the days I have been given joy; there will be days when I fall down, but it will give me a greater appreciation for when I have been given the grace to stand back up on my feet.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed. (2 Corinthians 4:7-9)


Filed under Adjusting to NF2, Random, Uncategorized