THE REAL YOU

Finding Inspiration At Every Turn. Sometimes.

You look in the mirror. What do you see? Is it any different than the pre-disabled you. In some situations the answer might be an angry YES! I have no hair. I have gained weight I don't even recognize myself or it might be the complete opposite. But, at the heart, it's still the real you. I went to the store today and saw a guy dressed in a dragon suit for Halloween. Was he a dragon? Of course not. Was he helpful? Yes. Was he nice? Yes. See the real "guy" wasn't the costume it was the person inside.

Look, I know what it means to have my hair fall out and have a bald spot, scars on my head and to look more odd than normal. But, I also know that doesn't change me. I can still be nice, kind, empathetic, and helpful. That's the real me. This is easy to say. But my diagnosis doesn't define me! I've had to answer the following:

Will my hair grow back? Are those scars going to remain?
Will I ever lose the weight I gained from my epilepsy treatment?
Are people laughing at me because my stuttering is worse because of my brain damage?
Will I ever regain my short-term memory?
Is there any value left in me or is it all gone?
Why don't relatives talk to me like they used to?
Why do I feel like a social outcast? Will it ever improve? Will the old me ever return? Or is it gone for good?
Why is my health getting worse?

You might read that and laugh at my honesty, but those are thoughts we all have who have a disability. It just changes based on how we are impacted. We are not the same as before. It's a fact and the quicker I accept it the faster I can grow back to wholeness.

The journey of transformation from full-health to the up-ending realities of a disabled life can start in the blink of an eye to a sudden life of quasi semi-empowerment that leverages the digital tools, strategies, and healthy reworking mentioned is the focus of this website. With that said keep in mind this is only one story.

There are as many stories as there are people going through life. It also reveals the strengths and weaknesses of relationships that oftentimes are unexpected. In my situation this is a journey or story full of pain, ups-and-down, and fighting for my health like I’ve never fought before. It is a fight. A battle, but it is just a snapshot of just my journey. We're all different. I have good and bad days, just like you. Times of encouragement and others of overwhelm and discouragement. Times when I am filled with full-body pain that make it difficult to even have a hard time getting out of bed and others when I am ready to take on the world. Like any chronic disease, you have to learn to manage the rollercoaster of emotions and also the physical ups and downs. You have to manage life like you have never done it before. This is not for cowards.

1. The Real Me

For me, my diagnosis has been everything. Personally, I had to know what was wrong for external validation. However, to be candid they still don’t know exactly what is wrong other than I do have epilepsy and I have had traumatic brain injuries including a brain bleed. I have small fiber neuropathy and I have had more MRIs, CT scans, and one PET scan than I can count as they have tried to figure out what is causing the most pain in my body. I had a doctor’s appointment yesterday and the doctor still didn’t know for sure what was causing the pain. However, for now we are saying the pain is caused by small fiber neuropathy. As one rheumatologist told me, neuropathy can be a label, like autoimmune disease. A label that is used when they aren’t sure what is going on. Also because of neuropathy being able to be labeled into neurology, rheumatology, and then a specialty within neurology, it is a term that can be used to define undefinable pain. From a patient’s perspective, it is like a merry-go-round. The deeper you study the topic the more you’ll understand why this occurs. Each patient and each situation can be unique. This leads to treatments that change and medications that vary regularly.

On a good day, you just need to learn to be flexible while on others it can be very challenging. Update: My autoimmune disease now has started to impact some of my other organs and body functions so I had to have my gallbladder removed after a terrible attack and I now also have gastroparesis which effects how, when and what I eat. I was eating healthy before to help manage my epilepsy, but that is not enough. Seriously? I wish I was making this up. But this is all interconnected (in my opinion).

The good thing is this is just my story. We're all different so our physical challenge are also different. The same goes with our medical care. This website and my story are divided into three main sections, but always with a focus on adapting, making the best of today, and trying to encourage those around us. I’d love to share the hope that it might bring you as it has helped me, but I have to be honest that sometimes those days are filled with tears and much grief and frustration.

I would strongly recommend that as always you work closely with your neurologist and other medical professionals. Ask questions, make them part of your recovery, if possible. Make them want to help you. It is truly through their help that you learn where you stand medically and also where you need to study deeper to understand your condition. It is only through this process that I have become a more informed and knowledgeable patient. It is my opinion, also if they don't want to help or answer your questions then find a new health care provider. This approach hasn’t always made me friends with my doctors, but it has helped me understand the medical world, how to be a better patient, and the realities of my chronic condition.

For example, when should I seek a second opinion and when do I need to learn to accept the cold hard realities I face and most important when do I need to go to the ER.

At a personal level: We live in a world that finds these issues difficult and therefore they are ready for you to be healed. They don't like these complications so don't be surprised when you sense frustration and the "just take a pill for it" or "just tough it out. It's not always about you and your condition." These are normal responses so don't be surprised when you encounter them.

As you will quickly learn, your diagnosis can seem like a critical part of your story as I mentioned before. If people can't see it you might get the "just get over it" sentiment. This is especially true for any disease that can’t be seen. You are dealing with a health crisis that is often invisible not only to you but also to family and friends. There are plenty of times when you wish your disease could be seen to help others understand your pain and challenges.

2. Sound Mind: Seeing what you feel

The next few days I will be spending the days with my service dog alone. I will be missing a wedding of two very special people due to physical limitations. It is so hard to explain what this is like. The best way I can describe it is that you are playing hide and seek by yourself. Mentally you know you can handle it, but psychologically being alone with a disability which is tough. You feel overwhelmed, lost, and alone. It is a tough road and usually only happens when it means you are alone as others travel. You might also face a long-term disconnect from those you want to understand, your pain, and your road to recovery and the pain that sometimes accompanies being alone. This is what they don't tell you and where you learn about the Real You!

The greater the physical manifestation, the easier it is for others to understand what you are facing. A Band-Aid tells the World you have a wound, but how do you communicate that you have epilepsy or that you fell and hit your head? How does a football player show they have traumatic brain injuries? It’s tough so we often keep keep it buried inside. As you’ll see on this journey untreated TBIs can lead to a whole host of other conditions that can impact your life and family.

I will focus on epilepsy and traumatic brain injuries and their impact on my family and the resulting traumas and the dark days and to learn ways to excel through not just to survive. A word of caution. This is not a quick fix. It truly is a process which is why having a support group or group of family or friends or friends that becomes so essential. Having a group to support you will certainly help make the process easier.

3. Always Be Your Advocate

I need to have my wife attend my appointments with me. The downside that I've noticed to this approach is that my doctor's talk to my wife and ignore me except like a mannequin in a store window. You can quickly feel disconnected from the process so the key is to stay on top of your diagnosis by reading scientific and medical journals to learn as much as possible about your issue. If this doesn't work. Stop the appointment and remind them about your role and presence. You are the patient. Granted you might not be as sharp as you were, but don't let yourself be pushed aside. Make sure you always know what is happening and that you feel comfortable. Ask questions. Stay engaged. If you don't then you will very quickly find yourself pushed aside. Remember this is not to make friends. This is to work to address your medical issue plain and simple.

The flip side is you also don't want to do appointments alone. Having someone join you during appointments can make sure you don't miss something or focus on a topic that was not a priority during the appointment. For example, I find that when I get bad news I focus on that and can quickly miss other data I needed to hear which is critical when it comes to medications.

We are just getting started but more is included in the PDF download.

4. Telling Your Story

Overview - The Day to Day Journey

Package your story, live it (almost like a third person), but don’t let the day-to-day dominate you. This is where I really messed up and upset most of my family. I’d share what was happening without realizing people had lost interest and had moved on with their lives. For me, I loss my right to drive, I was having surgery, I was having to force the reality of losing technology and also my business. I’d share how each thing made me feel not realizing most everyone had moved on. It was a rough challenge I had to accept or I’d just get bitter. Plus most people don’t understand epilepsy and the medications nor do they have an interest in what we had to live. I remember my Father asking me why I didn’t just take a pill for epilepsy and move on.

5. Your Daily Motivation - The Goal

Staying Positive and Motivated. This is perhaps the most important and difficult part of the journey oftentimes because you are fighting pain, the after effects of your medications, and just the realities of your chronic condition. However, finding there are two elements that can be a huge help. First, finding the positive in the little things of life. For example, finding areas of gratitude or positivity in life is a huge help or finding the small things that give you the nudge forward we all need.. Second, I write index cards of daily affirmations to help remind me of all the positive things in my life. Here are some tips on finding daily affirmations that help me keep a positive attitude, especially when struggling with the daily challenges of life with a disability:
Write index cards of daily affirmations. I write index cards with positive affirmations as a helpful practice.
Finding the positive in the little things of life. Focus on gratitude and positivity in small things can be a significant help.
Appreciate the little things. Finding the small things that give you the nudge forward: Identifying small motivators can provide the necessary push during difficult times.
Sharing your story. This is a tough one and where I struggle. People can be motivated by what you are experiencing in life. Hearing what you are going through can help them, but it is a fine line between the experiences of one person and the challenges of others so do this with a deal of caution. You will also find that others will give you feedback that can be extremely helpful to know what elements are the most helpful. Don’t hesitate to share, but watch for the feedback of others and notice their response.
Hold on Tight To Your Dreams. With any type of disability you often have to realize that “life as you knew it has changed” or as someone once told me “Your dreams have died, but this means you just need to capture new dreams and hold on tight to them.”
- Words are cheap, but you need to
  - 1.) See things have changed” but that life continues.
  - 2.) Now it’s time to dream big about the future and reach forward for the stars. This is uniquely you and it might be something you have always dreamed of achieving and only is possible now. You’ve wanted to garden, this might be the time to achieve that dream.

6. Handling Pain

Mental Pain

When I fell and faced my first traumatic brain injury. Up to this point I had had seizures some involving amnesia and others your more typical seizures. My medication had not worked to its full potential so I was still leaving me vulnerable to seizures. At times this would mean I would have seizures alone and others included others. To be candid, it didn’t really matter. A seizure is a seizure and the fact I was not alone made no difference except when I was in a hospital. I have catergorized this as mental pain, but mental pain is still pain especially when you are alone. Your doctor will also typically also want to have you score your level of depression to help highlight your mental pain. They will have to explain what these scores are to you.

Physical Pain

This is tough and I'm not a professional, but physical pain often involves feeling pain in the presence of others in ways they might be able to see. The only difference between physical pain and mental pain was that the physical pain might be shared with someone else. The significant difference between the two is whether you are feeling pain alone or with someone else. Physical pain experienced alone is some of the worst you can experience because typically the doctor may not know the source of the pain and secondly you might be having to feel the pain alone. The intensity of the pain is highly personal and really can only be measured individually. You find that you have to rely upon metaphors or numerical scores to help explain your pain. This is perhaps one of the greatest challenges. I find I have to dig deep to find the metaphors.

It feels like being struck by an ice pick
It feels like being hit by a truck
It feels like being a punching bag for Mike Tyson and he's winning
It feels like "and then using a metaphor you think the medical professional or family member can understand."

This is particularly tough if your pain is inside your body such as your head with epilepsy or migraines. I will sound like a broken record but talk to your medical professional about what you are feeling and do not self medicate. Never. Don't do it. You will pay costs that you can't imagine in the long run. No alcohol. No drugs. Nothing. Call the doctor. This is coming from someone who felt pain so bad I screamed in agony. I know.